Conditions

Acoustic Neuroma Vestibula Schwannom

British Acoustic Neuroma Association

By joining the charity information about the condition and its treatment will be available to you along with where, when and how to get the best support by meeting others who are going through a similar experience.

Location: National
Address: The British Acoustic Neuroma Association, Oak House B, Ransom Wood Business Park, Southwell Road West, Mnsfield, NG21 0HJ
Telephone: 01623 632143
Email: admin@bana-uk.com
Website: www.bana-uk.com

Acquired Brain Injury

UK Aquired Brain Injury Forum

Our priorities are to educate, inform and provide networking opportunities for professionals, service providers, planners and policy makers and to raise the profile of ABI and campaign for better services in the UK.

Location: National
Address: UKABIF, PO Box 159, Launceston, PL15 0AW
Telephone: 0845 608 0788
Email: info@ukabif.org.uk
Website: www.ukabif.org.uk

Acquired Epileptiform Aphasia

National Institute of Neurological Disorders and Stroke

Landau-Kleffner syndrome (LKS) is a rare, childhood neurological disorder characterized by the sudden or gradual development of aphasia (the inability to understand or express language).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Acute Disseminated Encephalomyelitis

National Institute of Neurological Disorders and Stroke

Acute disseminated encephalomyelitis (ADEM) is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin _ the protective covering of nerve fibers._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

ADHD

The Lighthouse Group

We now hold our relaxed, informal social meetings - on the second Monday of each month at the The Barns Cock Sparrow Lane, Huntington, Cannock. The lighthouse group offer support, help and information to young people who have ADHD and associated difficulties, also to their families and the people who care for them, covering most of Staffordshire.

Location: Staffordshire
Address: Burton, Lichfield, Stafford, Cannock & Tamworth
Telephone: 0 7754822288
Email: contact@lighthousegroup.org
Website: http://www.lighthousegroup.org.uk

Adie’s Pupil

National Institute of Neurological Disorders and Stroke

Holmes-Adie syndrome (HAS) is a neurological disorder affecting the pupil of the eye and the autonomic nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Adrenoleukodystrophy

National Institute of Neurological Disorders and Stroke

X-linked Adrenoleukodystrophy (ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Agnosia

National Institute of Neurological Disorders and Stroke

Agnosia is a rare disorder characterized by an inability to recognize and identify objects or persons. People with agnosia may have difficulty recognizing the geometric features of an object or face or may be able to perceive the geometric features but not know what the object is used for or whether a face is familiar or not.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Aicardi Syndrome

National Institute of Neurological Disorders and Stroke

Aicardi syndrome is a rare genetic disorder that primarily affects newborn girls.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Aicardi-Goutieres Syndrome Disorder

National Institute of Neurological Disorders and Stroke

Aicardi-Goutieres syndrome (AGS) is an inherited encephalopathy that affects newborn infants and usually results in severe mental and physical handicap.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Alexander Disease

National Institute of Neurological Disorders and Stroke

Alexander disease is one of a group of neurological conditions known as the leukodystrophies, disorders that are the result of abnormalities in myelin, the _white matter” that protects nerve fibers in the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Alpers’ Disease

National Institute of Neurological Disorders and Stroke

Alpers' disease is a progressive, neurodevelopmental, mitochondrial DNA depletion syndrome characterized by three co-occurring clinical symptoms: psychomotor regression (dementia); seizures; and liver disease.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Alternating Hemiplegia

National Institute of Neurological Disorders and Stroke

Alternating hemiplegia is a rare neurological disorder that develops in childhood, most often before the child is 18 months old. The disorder is characterized by recurrent episodes of paralysis that involve one or both sides of the body, multiple limbs, or a single limb.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Alzheimers Disease

Alzheimers Society

Alzheimer's Society is a_membership organisation, which works to improve the quality of life of people affected by_dementia_.

Location: Staffordshire South
Address: Unit 8 & 9 Windsor Business Park, Windsor Court Trent Valley Road, Lichfield
Telephone: 01543 255 955
Email: sharon.wright@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Alzheimers Disease

Alzheimers Society

Alzheimer's Society is a_membership organisation, which works to improve the quality of life of people affected by_dementia_.

Location: Staffordshire,Burntwood
Address: Unit 8 & 9 Windsor Business Park, Windsor Court Trent Valley Road, Lichfield
Telephone: 01543 255 955
Email: irene.larkin@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Alzheimers Disease

Alzheimers Society

Alzheimer's Society is a_membership organisation, which works to improve the quality of life of people affected by_dementia_.

Location: Staffordshire,Burntwood
Address: Unit 8 & 9 Windsor Business Park, Windsor Court Trent Valley Road, Lichfield
Telephone: 01543 255 955
Email: melanie.green@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Alzheimers Disease

Alzheimers Society

Alzheimer's Society is a_membership organisation, which works to improve the quality of life of people affected by_dementia_.

Location: Staffordshire,Lichfield
Address: Unit 8 & 9 Windsor Business Park, Windsor Court Trent Valley Road, Lichfield
Telephone: 01543 255 955
Email: melanie.green@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Alzheimers Disease

Alzheimers Society

Alzheimer's Society is a_membership organisation, which works to improve the quality of life of people affected by_dementia_.

Location: Staffordshire,Stafford
Address: Unit 8 & 9 Windsor Business Park, Windsor Court Trent Valley Road, Lichfield
Telephone: 01543 255 955
Email: kathrine.birch@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Alzheimers Disease

Alzheimers Society

Alzheimer's Society is a_membership organisation, which works to improve the quality of life of people affected by_dementia_.

Location: Staffordshire,Stoke On Trent
Address: Abbots house, 103 Abbots road, Stoke on Trent, St2 8DU
Telephone: 01782 541521
Email: NorthStaffs@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Amyotrophic lateral sclerosis (Motor Neurone Disease)

Motor Neurone Disease Association

A disease marked by progressive degeneration of the neurons giving rise to the corticospinal tract and of the motor cells of the brain stem and spinal cord, and resulting in a deficit of upper and lower motor neurons. The MND Association provides information, advice and support to anyone affected by motor neurone disease.

Location: Staffordshire
Address: PO Box 2029, Stafford, ST17 0HJ
Telephone: 01785 254176
Email: jackie.dornfordmay@mndassociation.org
Website: www.mndassociation.org

Angelman Syndrome

National Institute of Neurological Disorders and Stroke

Angelman syndrome is a genetic disorder that causes developmental delay and neurological problems.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Angiomatosis

National Institute of Neurological Disorders and Stroke

von Hippel-Lindau disease (VHL) is a rare, genetic multi-system disorder characterized by the abnormal growth of tumors in certain parts of the body.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

antiphospholipid syndrome

Arthritis Research UK

Antiphospholipid syndrome (APS) is sometimes known as «sticky blood syndrome or Hughes syndrome.

Location: National
Address: Copeman House, St Mary's Gate, Chesterfield, Derbyshire, S41 7TD
Telephone: 0300 790 0400
Email: enquiries@arthritisresearchuk.org
Website: www.arthritisresearchuk.org

Aphasia_ (Dysphasia)

Speakability

Speakability is the national charity dedicated to supporting and empowering people with Aphasia and their carers.

Location: National
Address: Speakability. 1 Royal Street. London. SE1 7LL
Telephone: 020 7261 9572
Email: _speakability@speakability.org.uk
Website: www.speakability.org.uk

Aphasia_(Dysphasia)

UK Connect

Connect aim to improve the lives of people living with aphasia and communication disability, equipping them to re-connect with life.

Location: National
Address: 16-18 Marshalsea Road London SE1 1HL
Telephone: _020 7367 0840
Email: _info@ukconnect.org
Website: www.ukconnect org.uk

Apraxia (Dyspraxia)

National Institute of Neurological Disorders and Stroke

Apraxia (called "dyspraxia" if mild) is a neurological disorder characterized by loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Arachnoid Cysts

National Institute of Neurological Disorders and Stroke

Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord._ _

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Arachnoiditis

Arachnoiditis UK

Location: National
Address: Mike Feehan, 49 Garrabost, Point, Isle of Lewis, HS2 0PW
Telephone: _01851870231
Email:
Website: www.arachnoiditis.co.uk

Arnold-Chiari Malformation

National Institute of Neurological Disorders and Stroke

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Arteriovenous Malformation

National Institute of Neurological Disorders and Stroke

Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Asperger Syndrome

North Staffs Asperger/Autism Association

Asperger syndrome (AS) is a developmental disorder._ It is an autism spectrum disorder (ASD), one of a distinct group of neurological conditions characterized by a greater or lesser degree of impairment in language and communication skills, as well as repetitive or restrictive patterns of thought and behavior._Becoming a member of the NSAAA allows you to access our library facilities, take part in social events as well as participate in our parent support groups and receive our newsletter.

Location: Staffordshire, North
Address: PO Box 3615, Stoke on Trent.
Telephone: 01782 627002
Email: info@nsaaa.co.uk
Website: www.nsaaa.org.uk

Asperger Syndrome

National Institute of Neurological Disorders and Stroke

Asperger syndrome (AS) is a developmental disorder._ It is an autism spectrum disorder (ASD), one of a distinct group of neurological conditions characterized by a greater or lesser degree of impairment in language and communication skills

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Ataxia

National Institute of Neurological Disorders and Stroke

Ataxia often occurs when parts of the nervous system that control movement are damaged.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Ataxia Telangiectasia

AT society

To improve quality of life and quality of care for people living with A-T while actively promoting research to lengthen lives and ultimately bring about a cure.

Location: National
Address: The A-T Society,1ACR- Rothamsted,Harpenden,Hertfordshire AL5 2JQ
Telephone: 01582 760 733
Email: info@atsociety.org.uk
Website: http://www.atsociety.org.uk/

Ataxia Telangiectasia

Ataxia UK

We fund research into finding treatments and a cure for ataxia, and we support people through our range of services.

Location: Nationwide
Address: Winchester House, Kennington Park, Cranmer Road, London, SW9 6EJ
Telephone: 0845 644 0606
Email: enquiries@ataxia.org.uk
Website: www.ataxia.org.uk

Ataxias and Cerebellar or Spinocerebellar Degeneration

National Institute of Neurological Disorders and Stroke

Ataxia often occurs when parts of the nervous system that control movement are damaged.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Attention deficit hyperactivity disorder

ADHD Family Support Group

Is like an Hidden Impairment or Invisible Disability.

Location: West Midlands
Address:
Telephone: Tracey 07932 424 362
Email: adhdsupportgroup@blueyonder.co.uk
Website: http://www.adhd.org.uk

Auditory processing disorder

APD UK

Auditory Processing Disorder (APD) is the INVISIBLE Disability, which randomly prevents the sufferers from processing auditory (sound and including verbal) information. APDUK_is trying to promote an increased understanding of APD in the UK by both the professional establishment, especially in the fields of education and employment, and the general public.

Location: Nationwide
Address:
Telephone:
Email:
Website: http://www.apduk.org.uk

Autism

The National Autistic Society

Becoming a member of the NSAAA allows you to access our library facilities, take part in social events as well as participate in our parent support groups. You will also receive our newsletter which is sent out 3 times a year.

Location: National
Address: The National Autistic Society 393 City Road London EV1V 1NG
Telephone: 020 7833 2299
Email: nas@nas.org.uk
Website: www.autism.org.uk

Autism

ASSIST Autism and Sensory Support in Staffordshire

We were set up by Founder Kevin Healey to provide information and support to others in the Stoke-on-Trent & Staffordshire area.

Location: Staffordshire
Address: The Flash Ley Centre, Hawksmoor Road, Stafford, ST17 9DR
Telephone: 01785 356830
Email: assist@staffordshire.gov.uk|
Website: http://education.staffordshire.gov.uk/

Autism

Autism Outreach Team

ASSIST_provides post-16_support for people with a sensory impairment and for people who have an autism spectrum disorder.

Location: Staffordshire
Address: The Flash Ley Centre, Hawksmoor Road, Stafford, ST17 9DR
Telephone: 01785 356830
Email: julie.birchall@staffordshire.gov.uk
Website: http://education.staffordshire.gov.uk/

Autism

Staffordshire Adults Autistic Society

Location: Staffordshire
Address: Unit 31, Dudson Centre, Hope Street, Hanley, ST1 5DD
Telephone: 01782 683053
Email: saas.headoffice@gmail.com
Website: www.saas.uk.com

Autism

North Staffs Asperger/Autism Association

If you can't find the answer to your question on the website, or_would prefer to speak to someone,_you can join the online community, speak to one of the Autism Helpline advisors or use the Autism Helpline enquiry form._

Location: Staffordshire,North
Address: PO Box 3615, Stoke on Trent.
Telephone: 01782 627002
Email: info@nsaaa.co.uk
Website: www.nsaaa.org.uk

Barth Syndrome

National Institute of Neurological Disorders and Stroke

Barth syndrome (BTHS) is a rare, genetic disorder of lipid metabolism that primarily affects males.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Batten Disease

National Institute of Neurological Disorders and Stroke

Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. In some cases, the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Bell’s palsy

Bells palsy association

The main aim of the association is to provide information about the condition to the sufferer and their families

Location: National
Address: Online Support group
Telephone:
Email:
Website: www.bellspalsy.org.uk

Benign Essential Blepharospasm

National Institute of Neurological Disorders and Stroke

Benign essential blepharospasm (BEB) is a progressive neurological disorder characterized by involuntary muscle contractions and spasms of the eyelid muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Benign Focal Amyotrophy

National Institute of Neurological Disorders and Stroke

Monomelic amyotrophy (MMA) is characterized by progressive degeneration and loss of motor neurons, the nerve cells in the brain and spinal cord that are responsible for controlling voluntary muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Benign Intracranial Hypertension

National Institute of Neurological Disorders and Stroke

Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Bernhardt-Roth Syndrome

National Institute of Neurological Disorders and Stroke

Meralgia paresthetica is a disorder characterized by tingling, numbness, and burning pain in the outer side of the thigh.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Binswanger’s Disease

National Institute of Neurological Disorders and Stroke

Binswanger's disease (BD), also called subcortical vascular dementia, is a type of dementia caused by widespread, microscopic areas of damage to the deep layers of white matter in the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Bloch-Sulzberger Syndrome

National Institute of Neurological Disorders and Stroke

Incontinentia pigmenti (IP) is an inherited disorder of skin pigmentation that is also associated with abnormalities of the teeth, skeletal system, eyes, and central nervous system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Brachial Plexus injury

TBPI Group

The TBPI Group is a charity for people affected by traumatic Brachial Plexus Injury, offering support and information via their website and local meetings.

Location: National
Address: 1 Malvern Rise. Hadfield. Glossop. SK13 1QW.
Telephone: 1457 867140
Email: neilrf64@aol.com
Website: tbpiukgroup.homestead.com

Bradbury-Eggleston Syndrome

National Institute of Neurological Disorders and Stroke

Orthostatic hypotension is a sudden fall in blood pressure that occurs when a person assumes a standing position.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Brain Aneurysm

National Institute of Neurological Disorders and Stroke

A cerebral aneurysm is a weak or thin spot on a blood vessel in the brain that balloons out and fills with blood. _An aneurysm can press on a nerve or surrounding tissue, and also leak or burst, which lets blood spill into surrounding tissues (called a hemorrhage).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Brain Injury

BASIC

Brain and Spinal Injury Charity are experts in rebuilding lives after brain and spinal injuries. They offer 30 rehabilitation services to individuals and families helping them to adjust after head injuries.

Location: National
Address: 554 Eccles New Road Salford M5 5AP
Telephone: 0161 7076441
Email:
Website: http://www.basiccharity.org.uk

Brain Injury

Headway South Staffordshire

Headway South staffordshire provides a specialist day service for people with acquired brain injury. They offer services to understand the behavioural and physical aspects of brain injury.

Location: Staffordshire
Address: Arthur Findlay Centre 96a Stone road Stafford ST16 2RS
Telephone: 01785 257462
Email: headway@headwaysouthstaffs.com
Website: http://www.headwaysouthstaffs.com

Brain Tumour

The Brain Tumour Charity

Offers monthly support groups aimed at patients and family members of those affected by brain tumours. Dates are available on the website or contact number/e-mail .

Location: Staffordshire
Address: Staffordshire Hammer Out Support Group. Contact Rosemary Wormington
Telephone: 07546 912594
Email: support.midlands@hammerout.co.uk
Website: http://www.thebraintumourcharity.org/

Brown-Sequard Syndrome

National Institute of Neurological Disorders and Stroke

Brown-Sequard syndrome (BSS) is a rare neurological condition characterized by a lesion in the spinal cord which results in weakness or paralysis (hemiparaplegia) on one side of the body and a loss of sensation (hemianesthesia) on the opposite side.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

CADASIL

National Institute of Neurological Disorders and Stroke

CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy) is an inherited form of cerebrovascular disease that occurs when the thickening of blood vessel walls blocks the flow of blood to the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Canavan disease

Canavan disease support group

A community of patients, family members and friends dedicated to dealing with Canavan Disease, together through online support

Location: National
Address: Online support group
Telephone:
Email:
Website: www.mdjunction.com

Cancer

MacMillan Cancer Support Line

Helpline open Monday to Friday 9 am to 8 pm.

Location: Nationwide
Address: MacMillan Cancer Support Line
Telephone: 08088 080000
Email: from website
Website: www.macmillan.org.uk

Cancer

MacMillan Cancer Information Centre

Helpline open Monday to Friday 9 am to 8 pm.

Location: Staffordshire,Burton on Trent
Address: MacMillan Cancer Information Centre, Queens Hospital, Belvedere Road, Burton upon Trent, Staffordshire, DE13 0RB
Telephone: 01283 593186
Email: macmillancancerinformation@burton-tr.wmids.nhs.uk
Website: www.macmillan.org.uk

Cancer

MacMillan Cancer and Support Centre, Stoke on Trent

Helpline open Monday to Friday 9 am to 8 pm.

Location: Staffordshire,Stoke on Trent
Address: Central Outpatients Department, Hartshill Road, Hartshill, Stoke on Trent, Staffordshire, ST4 7PA
Telephone: 01782 554363
Email:
Website: www.macmillan.org.uk

Capgras syndrome

Stroke Association Family Carer and Support Co-ordinator

The stroke association offers help and support for those affected by Capgas syndrome

Location: Staffordshire, South
Address: Stroke Neurological Unit, 1st Floor, Sheldon Unit, Good Hope Hospital, Rectory Road, Sutton Coldfield, West Midlands, B75 7RR
Telephone: 0121 424 9466
Email: info@stroke.org.uk
Website: www.stroke.org.uk

Carpal tunnel syndrome

Carpal tunnel support group

A community of patients, family members and friends dedicated to dealing with Carpal tunnel syndrome through online support

Location: National
Address: Online support group
Telephone:
Email:
Website: www.mdjunction.com

Causalgia

secretary@painrelieffoundation.org.uk

The Pain Relief Foundation is a UK charity dedicated to funding research and education into the relief of_chronic pain_in humans

Location: National
Address: Clinical Sciences Centre, University Hospital Aintree, Lower Lane, Liverpool, L9 7AL
Telephone: 0151 529 5820_____
Email: secretary@painrelieffoundation.org.uk
Website: www.painrelieffoundation.org

Cavernomas

National Institute of Neurological Disorders and Stroke

A cerebral cavernous malformation (CCM) is a collection of small blood vessels (capillaries) in the central nervous system (CNS) that is enlarged and irregular in structure._ In CCM, the walls of the capillaries are thinner than normal, less elastic, and prone to leaking._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Central Cord Syndrome

National Institute of Neurological Disorders and Stroke

Central cord syndrome is the most common form of incomplete spinal cord injury characterized by impairment in the arms and hands and to a lesser extent in the legs. The brain's ability to send and receive signals to and from parts of the body below the site of injury is reduced but not entirely blocked.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Central pain syndrome

Stroke Association Family Carer and Support Co-ordinator

The stroke association offers help,support and information to those affected by Central pain syndrome

Location: Staffordshire, South
Address: Stroke Neurological Unit, 1st Floor, Sheldon Unit, Good Hope Hospital, Rectory Road, Sutton Coldfield, West Midlands, B75 7RR
Telephone: 0121 424 9466
Email: info@stroke.org.uk
Website: www.stroke.org.uk

Central pontine myelinolysis

National Institute of Neurological Disorders and Stroke

Clinical presentation of CPM is heterogeneous and depend on the regions of the brain involved. Observable immediate precursors may include seizures, disturbed consciousness, gait changes, and decrease or cessation of respiratory function.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Centronuclear myopathy

Muscular Dystrophy Campaign

Centronuclear or Myotubular Myopathy belong to the family of congenital myopathies which are characterised by muscle weakness. The muscular dystrophy campaign is here to offer information,help and supportt to you and your family.

Location: National
Address: 61a Great Suffolk Street London SE1 OBU
Telephone: 020 7803 4800
Email: info@muscular-dystrophy.org
Website: www.muscular-dystrophy.org

Ceramidase Deficiency

National Institute of Neurological Disorders and Stroke

Farbers disease describes a group of inherited metabolic disorders called lipid storage diseases, in which excess amounts of lipids (oils, fatty acids, and related compounds) build up to harmful levels in the joints, tissues, and central nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cerebal aneurysm

Headway

Support group for head injured and their families and carers

Location: National
Address: Bradbury House 190 Bagnall Road Nttingham NG6 8SF
Telephone: 0115 924 0800
Email: helpline@headway.org.uk
Website: www.headway.org.uk

Cerebal atrophy

Multiple system Astrophy Trust

The Multiple System Atrophy Trust is the UKs support and information service for people with multiple system atrophy, their families and carers. It also funds research into the treatment and causes of MSA

Location: National
Address: Southbank House Black Prince Road London SE1 7SJ
Telephone: 020 7940 4666
Email: nurses@msatrust.org.uk
Website: www.msatrust.org.uk

Cerebellar Degeneration

National Institute of Neurological Disorders and Stroke

Cerebellar degeneration is a process in which neurons in the cerebellum - the area of the brain that controls coordination and balance - deteriorate and die.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cerebellar Hypoplasia

National Institute of Neurological Disorders and Stroke

Cerebellar hypoplasia is a neurological condition in which the cerebellum is smaller than usual or not completely developed._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cerebral arteriosclerosis

The Brain Tumour Charity

The Brain Tumour Charity offers information and support for those suffering with Cerebral Arteriosclerosis.

Location: National
Address:
Telephone: 1252749990
Email: support@thebrainumourcharity.org
Website: www.thebraintumourcharity.org.uk

Cerebral Beriberi

National Institute of Neurological Disorders and Stroke

Wernicke's encephalopathy is a degenerative brain disorder caused by the lack of thiamine (vitamin B1). It may result from alcohol abuse, dietary deficiencies, prolonged vomiting, eating disorders, or the effects of chemotherapy.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cerebral gigantism (Sotos Syndrome)

West Midlands

Sotos syndrome_(cerebral_gigantism) is a rare genetic disorder characterized by excessive physical growth during the first 2 to 3 years of life.

Location: National
Address: 21 Malvern Drive, Sutton Coldfield, B76 1PZ
Telephone: Tam Fry - 0208 912 0722
Email: info@childgrowthfoundation.org
Website: www.childgrowthfoundation.org

Cerebral Hypoxia

National Institute of Neurological Disorders and Stroke

Cerebral hypoxia refers to a condition in which there is a decrease of oxygen supply to the brain even though there is adequate blood flow.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cerebral Palsy

Scope

Our services and activities will include creating housing , education and employment opportunities; expert and loving care; support for families and carers; research advocacy; information and advice services; support for self-help groups; campaigning and other activities designed to help change public behaviour.

Location: National
Address: Scope 6 Market Road London N7 9PW
Telephone: 0808 8003333
Email: response@scope.org.uk
Website: www.scope.org.uk

Cerebral Palsy

Scope

Scope are about changing society for the better, so that disabled people and their families can have the same oppertunities as everyone eles. They offer practical support-from imformation sevices to education and everyday care.

Location: National
Address: 6 Market Road, London, N7 9PW
Telephone:
Email: response@scope.org.uk
Website: www.scope.org.uk

Cerebral Palsy

Star Foundation

The charity's aim is to raise awareness of the condition and raise funds to buy mobility,communication and educational aids for people with cerebral palsy.

Location: National
Address: 46/48 Nelson Road Tunbridge Wells TN2 5AN
Telephone:
Email: info@starfoundation.co.uk
Website: www.starfoundation.co.uk

Cerebral Palsy

Cerebral palsy Mid Staffs

We work with disabled people and their families. We offer practical support _ from information services to education and everyday care.

Location: Staffordshire
Address: Greenhall complex Second Avenue Holmcroft Stafford ST16 1PS
Telephone: 01785 255526
Email: office@cpmidstaffs.co.uk
Website: www.cpmidstaffs.co.uk

Cerebral vasculitis

Vasculitis uk

Our aim is to raise general awareness and improve treatment and support for those effected by Vasculitis.Including fundraising and local support groups.

Location: National
Address: West Bank House Winster Matlock DE4 2DQ
Telephone: 01629-650549
Email: john.mills@vasculitis.org.uk
Website: www.vasculitis.org.uk

Cerebro-Oculo-Facio-Skeletal Syndrome (COFS)

National Institute of Neurological Disorders and Stroke

Cerebro-oculo-facio-skeletal syndrome (COFS) is a pediatric, genetic, degenerative disorder that involves the brain and the spinal cord.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cervical spinal stenosis

The Spinal Foundation

The Spinal Founation was formed to help people who have been simply left to cope with their pain and dissability.Meetings for patients and families to support each other and share experiences.

Location: National
Address: Fawkham Manor Hospital Manor Lane Fawkham Longfeilld Kent DA3 8ND
Telephone: +44 (0) 1474 879 900
Email: jago@spinal-foundation.org
Website: www.spinal-foundation.org

Charcot-Marie-Tooth disease

CMT UK

Working to support those suffering with CMT and their families and carers. Also to raise awareness of the condition.

Location: National
Address: 98 Broadway Southbourne Bournemouth BH6 4EH
Telephone: 01202 432048_
Email: info@cmtuk.org.uk
Website: www.cmt.org.uk

Charcot-Marie-Tooth Disease

CMT United Kingdom

Working to support people affected by Charcot-Marie-Tooth Disease.

Location: Nationwide
Address: Charcot Marie Tooth - CMT PO Box 5089, Christchurch, BH23 7ZX
Telephone: 01202 481161
Email:
Website: www.cmt.org.uk

Chiari Malformation

Brain and Spine Foundation

The Brain and Spine Foundation is a registered charity which is funded by voluntary donations.They are commited to providing reliable information and support for those living with a neurological condition.

Location: National
Address: 3.36 Csanterbury Court Kennington Park 1-3 Brixton Road London
Telephone: 020 7793 5900
Email: info@brainandspine.org.uk
Website: www.brainandspine.org.uk

Cholesterol Ester Storage Disease

National Institute of Neurological Disorders and Stroke

Acid lipase disease occurs when the enzyme needed to break down certain fats that are normally digested by the body is lacking or missing, resulting in the toxic buildup of these fats in the bodys cells and tissues. These fatty substances, called lipids, include waxes, oils, and cholesterol.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Chorea

Huntingtons Disease Association

The Huntington's Disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's disease families.

Location: National
Address: 108 Battersea High Street London SW11 3HP
Telephone: 01952 606 155
Email: sallphonenix@hda.org.uk
Website: www.hda.org.uk

Choreoacanthocytosis

National Institute of Neurological Disorders and Stroke

Neuroacanthocytosis refers to a group of genetic conditions that are characterized by movement disorders and acanthocytosis (abnormal, spiculated red blood cells).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Chronic Fatigue Syndrome

The ME Association

The ME Association provides information and support on ME/CFS to people with ME/CFS. We strive to develop professional and high quality information materials and services.

Location: National
Address: 60 Broadgate Weston Spalding Lincs PE12 6HY
Telephone: 01280 818964_
Email: tony@meassociation.org.uk
Website: http://www.meassociation.org.uk/?page_id=1226

Chronic Fatigue Syndrome

The me-staffordshire

We are an active and caring support group for people with M.E and associated Chronic Fatigue Conditions.We hold monthly meetings throughout Staffordshire

Location: Staffordshire
Address:
Telephone:
Email:
Website: www.me-staffordshire.co.uk

Chronic inflammatory demyelinating polyneuropathy

GBS-CIDP support group

We provide_information_and support to those affected by GBS, CIDP and related conditions. Our support activities are restricted to the United Kingdom and the Republic of Ireland. We spread awareness of the illnesses throughout Britain and Ireland and make grants for research projects.

Location: National
Address: Ground floor Woodholme House Heckington Buisness Park Station Road Heckington Sleaford NG349JH
Telephone: 01529 469910
Email: admin@gbs.org.uk
Website: http://www.gbs.org.uk

Chronic Orthostatic Intolerance

National Institute of Neurological Disorders and Stroke

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Chronic Pain

The Pain Relief Foundation

The pain relief foundation was established as a charity in response to the urgent need for research into Chronic pain.

Location: National
Address: Clinical Sciences Centre.University Hospital Aintree. Livetpool L97AL
Telephone: 0151 529 5820
Email: secretary@painrelieffoundation.org.uk
Website: www.painreliefgfoundation.org.uk

Cockayne Syndrome Type II

National Institute of Neurological Disorders and Stroke

Cerebro-oculo-facio-skeletal syndrome (COFS) is a pediatric, genetic, degenerative disorder that involves the brain and the spinal cord.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Coffin_Lowry syndrome

Contact a family

Contact a Family improves the lives of all families with disabled children. With them, we transform their lives, break down barriers and tackle disadvantage through ambitious, collaborative and innovative work. We make a real and lasting impact and are a

Location: National
Address: 209-211 City Road, London, EC1V 1JN
Telephone: 2076088700
Email:
Website: www.cafamily.org.uk

Complex regional pain syndrome

The Pain Relief Foundation

The pain relief foundation was established as a charity in response to the urgent need for research into Chronic pain.

Location: National
Address: Clinical Sciences Centre.University Hospital Aintree. Livetpool L97AL
Telephone: 0151 529 5820
Email: secretary@painrelieffoundation.org.uk
Website: www.painreliefgfoundation.org.uk

Compression neuropathy

Arthritis Research UK

Antiphospholipid syndrome (APS) is sometimes known as «sticky blood syndrome or Hughes syndrome.

Location: National
Address: Copeman House, St Mary's Gate, Chesterfield, Derbyshire, S41 7TD
Telephone: 0300 790 0400
Email: enquiries@arthritisresearchuk.org
Website: www.arthritisresearchuk.org

Congenital facial diplegia

Self-Help UK

M_bius syndrome results from the underdevelopment of the_VI_and_VII_cranial nerves.

Location: National
Address: Intuition Communication Ltd., 3 Churchgates, Wilderness, Berkhamsted, Hertfordshire HP4 2UB
Telephone:
Email:
Website: www.self-help.org.uk

Congenital Myasthenia

National Institute of Neurological Disorders and Stroke

All forms of myasthenia are due to problems in the communication between nerve cells and muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Congenital Myopathy

National Institute of Neurological Disorders and Stroke

A myopathy is a disorder of the muscles that usually results in weakness.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cranial arteritis

PMRGCAuk

Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) are linked rheumatic conditions that have been little known by the public and little understood in medicine. Polymyalgia Rheumatica & Giant Cell Arteritis UK (PMRGCAuk) is a registered charity established to meet the needs of people with these debilitating conditions by offering support, raising awareness and promoting research.

Location: West Midlands
Address: c/o BARC, 2nd floor, Birmingham, Central Library, Chamberlain Square, Birmingham , B3 3HQ
Telephone:
Email: info@pmrgcauk.com
Website: www.pmrgcauk.com

Craniosynostosis

Headlines

Headlines is a charitable organisation based in the U.K which aims to offer help and support to all those effeected by Craniosynostosis.

Location: National
Address: Headlines.8 Footes Lane. Frampton Cotterell. Bristol.BS362JQ
Telephone:
Email: info@headlines.org.uk
Website: www.headliness.org.uk

Cree encephalitis

National Institute of Neurological Disorders and Stroke

Aicardi-Goutieres syndrome (AGS) is an inherited encephalopathy that affects newborn infants and usually results in severe mental and physical handicap.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Creutzfeltd-jacob disease

Brain Research Trust

Brain research trust is the umberella charity for research into conditions of the brain and nervous system. We were established in 1971 to promote and support research into causes ,treatment and prevention of neuroloogical diseases.

Location: National
Address: B.R.T. 15 Southampton place London WC1A 2AJ
Telephone: 0)20 7404 9982
Email: info@brt.org.uk
Website: www.brt.org.uk

Creutzfeltd-jacob disease

CJD support network

The CJD support network is a patient support group providing help and support for people with all strains of CJD, their carers and concerned professionals.

Location: National
Address: CJD Support Network P.O box 346 Market Drayton Shropshire TF94WN
Telephone: 01630 673 993
Email: aturner@cjdsupport.net
Website: www.cjdsupport.net

Cumulative Trauma Disorders

National Institute of Neurological Disorders and Stroke

Repetitive motion disorders (RMDs) are a family of muscular conditions that result from repeated motions performed in the course of normal work or daily activities.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cytomegalic Inclusion Body Disease

National Institute of Neurological Disorders and Stroke

Cytomegalovirus (CMV) is a virus found throughout the world that infects between 50 to 80 percent of all adults in the United States by the age of 40.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Cytomegalovirus infection

Contact a family

Contact a Family improves the lives of all families with disabled children. With them, we transform their lives, break down barriers and tackle disadvantage through ambitious, collaborative and innovative work. We make a real and lasting impact and are a force for positive change.

Location: National
Address: 209-211 City Road, London, EC1V 1JN
Telephone: 020 7608 8700
Email:
Website: www.cafamily.org.uk

Dancing Eyes – Dancing Feet Syndrome

National Institute of Neurological Disorders and Stroke

Opsoclonus myoclonus is a rare neurological disorder characterized by an unsteady, trembling gait, myoclonus (brief, shock-like muscle spasms), and opsoclonus (irregular, rapid eye movements).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dandy-Walker syndrome

Dandy-Walker Alliance, Inc.

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it.

Location: International
Address: 10325 Kensington Pkwy Suite 384 Kensington, Maryland 20895
Telephone: 1-877-326-3992
Email: comments@dandy-walker.org_
Website: www.dandy-walker.org

Dandy-Walker Syndrome

National Institute of Neurological Disorders and Stroke

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum. The Dandy-Walker Alliance is here to assist researchers with patient recruitment, screening and awards grants based on the scientific quality of research plans;

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dawson disease

National Institute of Neurological Disorders and Stroke

Subacute sclerosing panencephalitis_(SSPE) is a rare chronic, progressive_encephalitis_that affects primarily children and young adults, caused by a persistent infection_measles virus_(which can be a result of a mutation of the virus itself).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dawson Disease

National Institute of Neurological Disorders and Stroke

Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder of children and young adults that affects the central nervous system (CNS).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

De Morsier’s syndrome

Patient.co.uk

Septo-optic dysplasia (SOD) is a rare, heterogeneous condition characterised by a combination of Optic nerve hypoplasia: Midline brain abnormalities (including absence of the corpus callosum and septum pellucidum)

Location: National
Address: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY
Telephone:
Email:
Website: www.patient.co.uk

Dejerine-Klumpke palsy

National Institute of Neurological Disorders and Stroke

Erb-Duchenne (Erb's) palsy refers to paralysis of the upper brachial plexus. Dejerine-Klumpke (Klumpke's) palsy refers to paralysis of the lower brachial plexus.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dentatorubral Atrophy

National Institute of Neurological Disorders and Stroke

Dyssynergia Cerebellaris Myoclonica refers to a collection of rare, degenerative, neurological disorders characterized by epilepsy, cognitive impairment, myoclonus, and progressive ataxia._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dermatomyositis

National Institute of Neurological Disorders and Stroke

Dermatomyositis is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Developmental dyspraxia

National Institute of Neurological Disorders and Stroke

Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Devic’s Syndrome

National Institute of Neurological Disorders and Stroke

Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Diabetic neuropathy

Arthritis Research UK

Antiphospholipid syndrome (APS) is sometimes known as «sticky blood syndrome or Hughes syndrome. APS can cause blood clotting in your arteries or veins and is a major cause of recurrent miscarriage. Its also one of the most common causes of strokes in young people. Its estimated that 1 in 5 people whove had a stroke before the age of 40 may have APS.

Location: National
Address: Copeman House, St Mary's Gate, Chesterfield, Derbyshire, S41 7TD
Telephone: 0300 790 0400
Email: enquiries@arthritisresearchuk.org
Website: www.arthritisresearchuk.org

Diffuse sclerosis

National Institute of Neurological Disorders and Stroke

Schilder's disease is a rare progressive demyelinating disorder which usually begins in childhood.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dravet syndrome

National Institute of Neurological Disorders and Stroke

Dravet syndrome, also called severe myoclonic epilepsy of infancy (SMEI), is a severe form of epilepsy._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dysautonomia

National Institute of Neurological Disorders and Stroke

Dysautonomia refers to a disorder of autonomic nervous system (ANS) function.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dysgraphia

National Institute of Neurological Disorders and Stroke

Dysgraphia is a neurological disorder characterized by writing disabilities. Specifically, the disorder causes a person's writing to be distorted or incorrect. In children, the disorder generally emerges when they are first introduced to writing.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dyspraxia

National Institute of Neurological Disorders and Stroke

Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dyssynergia Cerebellaris Progressiva

National Institute of Neurological Disorders and Stroke

Dyssynergia Cerebellaris Myoclonica refers to a collection of rare, degenerative, neurological disorders characterized by epilepsy, cognitive impairment, myoclonus, and progressive ataxia._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Dystonia

The Dystonia Society

Support nationwide for those affected by Dystonia

Location: National
Address: 1st Floor, Camelford House, 89 Albert Embankment, London, SE1 7TP
Telephone: 0845 458 6211
Email:
Website: www.dystonia.org.uk

Dystonias

National Institute of Neurological Disorders and Stroke

The dystonias are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Early Infantile Epileptic Encephalopathy

National Institute of Neurological Disorders and Stroke

Ohtahara syndrome is a neurological disorder characterized by seizures._ The disorder affects newborns, usually within the first three months of life (most often within the first 10 days) in the form of epileptic seizures.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Empty sella syndrome

National Institute of Neurological Disorders and Stroke

Empty Sella Syndrome (ESS) is a disorder that involves the sella turcica, a bony structure at the base of the brain that surrounds and protects the pituitary gland.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Encephalitis

Encephalitis Society

To improve the quality of life of all people affected directly and indirectly by Encephalitis

Location: National
Address: 32 Castlegate, Malton YO17 7DT
Telephone:
Email: support@encephalitis.info
Website: www.encephalitis.info

Encephalitis Lethargica

National Institute of Neurological Disorders and Stroke

Encephalitis lethargica is a disease characterized by high fever, headache, double vision, delayed physical and mental response, and lethargy.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Encephalocele

National Institute of Neurological Disorders and Stroke

Encephaloceles are rare neural tube defects characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Encephalopathy

National Institute of Neurological Disorders and Stroke

Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Encephalopathy (familial infantile)

National Institute of Neurological Disorders and Stroke

Aicardi-Goutieres syndrome (AGS) is an inherited encephalopathy that affects newborn infants and usually results in severe mental and physical handicap.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Epilepsy

Joint Epilepsy Council

Epilepsy support

Location: Nationwide
Address: Joint Epilepsy Council
Telephone:
Email:
Website: www.jointepilepsycouncil.org.uk

Epilepsy

Clinical Nurse Specialist in Epilepsy

Location: Staffordshire
Address: Department of Neurology, Mid Staffordshire NHS Foundation Trust, Stafford Hospital, Weston Road, Stafford, ST16 3SA
Telephone: 01785 239230 ext. 4239
Email: phil.tittensor@midstaffs.co.uk

Epilepsy

Epilepsy Parents Support Group Staffordshire

Umbrella organisation for multivarious organisations concerned with the condition.

Location: Staffordshire
Address: Web-based
Telephone: 07919 978872
Email: epilepsyparents@gmail.com
Website: www.epilepsy-parents.org.uk

Epileptic Hemiplegia

National Institute of Neurological Disorders and Stroke

Todd's paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Erb’s palsy

National Institute of Neurological Disorders and Stroke

The brachial plexus is a network of nerves that conducts signals from the spine to the shoulder, arm, and hand. Brachial plexus injuries are caused by damage to those nerves.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Essential tremor

National Institute of Neurological Disorders and Stroke

Tremor is an unintentional, somewhat rhythmic, muscle movement involving to-and-fro movements (oscillations) of one or more parts of the body.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Extrapontine Myelinolysis

National Institute of Neurological Disorders and Stroke

Central pontine myelinolysis (CPM) is a neurological disorder that most frequently occurs after too rapid medical correction of sodium deficiency (hyponatremia).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Fabry’s disease

National Institute of Neurological Disorders and Stroke

Fabry disease is caused by the lack of or faulty enzyme needed to metabolize lipids, fat-like substances that include oils, waxes, and fatty acids._ The disease is also called alpha-galactosidase-A deficiency._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Fahr’s syndrome

National Institute of Neurological Disorders and Stroke

Fahr's Syndrome is a rare, genetically dominant, inherited neurological disorder characterized by abnormal deposits of calcium in areas of the brain that control movement, including the basal ganglia and the cerebral cortex.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Familial Dysautonomia

National Institute of Neurological Disorders and Stroke

Dysautonomia refers to a disorder of autonomic nervous system (ANS) function.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Familial Idiopathic Basal Ganglia Calcification

National Institute of Neurological Disorders and Stroke

Fahr's Syndrome is a rare, genetically dominant, inherited neurological disorder characterized by abnormal deposits of calcium in areas of the brain that control movement, including the basal ganglia and the cerebral cortex.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Familial Periodic Paralyses

National Institute of Neurological Disorders and Stroke

Familial periodic paralyses are a group of inherited neurological disorders caused by mutations in genes that regulate sodium and calcium channels in nerve cells. They are characterized by episodes in which the affected muscles become slack, weak, and unable to contract. Between attacks, the affected muscles usually work as normal.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Familial spastic paralysis

National Institute of Neurological Disorders and Stroke

Hereditary spastic paraplegia (HSP), also called familial spastic paraparesis (FSP), refers to a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Farber’s Disease

National Institute of Neurological Disorders and Stroke

Farbers disease describes a group of inherited metabolic disorders called lipid storage diseases, in which excess amounts of lipids (oils, fatty acids, and related compounds) build up to harmful levels in the joints, tissues, and central nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Foville’s syndrome

National Institute of Neurological Disorders and Stroke

Foville's syndrome is caused by the blockage of the perforating branches of the basilar artery in the region of the brainstem known as the pons.[

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Friedreich’s ataxia

National Institute of Neurological Disorders and Stroke

Friedreich's ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Fronto-Temporal Dementia

The Frontotemporal Support Group

The FTDSG works closely with the Association for Frontotemporal Degeneration_, an American group dedicated to the support of people with FTD and their carers.The Frontotemporal Dementia Support Group is particularly directed towards carers who are coping with behavioural changes in a partner, family member or friend

Location: West Midlands
Address: 22 Brushwood Drive, Chorleywood, WD3 5RT
Telephone: 01743 492175
Email: jill.walton@ftdsg.org
Website: www.ftdsg.org

Gaucher’s disease

National Institute of Neurological Disorders and Stroke

Gaucher disease is the most common of the inherited metabolic disorder known as lipid storage diseases.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Generalized Gangliosidoses

National Institute of Neurological Disorders and Stroke

The gangliosidoses are a group of inherited metabolic diseases caused by a deficiency of the different proteins needed to break down fatty substances called lipids.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Gerstmann’s syndrome

National Institute of Neurological Disorders and Stroke

Gerstmann's syndrome is a cognitive impairment that results from damage to a specific area of the brain -- the left parietal lobe in the region of the angular gyrus. It may occur after a stroke or in association with damage to the parietal lobe.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Giant Axonal Neuropathy

National Institute of Neurological Disorders and Stroke

Giant axonal neuropathy (GAN) is a rare inherited genetic disorder that affects both the central and peripheral nervous systems._ The majority of children with GAN will begin to show symptoms of the disease sometime before five years of age.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Giant cell arteritis

National Institute of Neurological Disorders and Stroke

Vasculitis is an inflammation of blood vessels, which includes the veins, arteries, and capillaries._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Giant cell inclusion disease

National Institute of Neurological Disorders and Stroke

Cytomegalovirus (CMV) is a virus found throughout the world that infects between 50 to 80 percent of all adults in the United States by the age of 40.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Globoid Cell Leukodystrophy

National Institute of Neurological Disorders and Stroke

Krabbe disease is a rare, inherited degenerative disorder of the central and peripheral nervous systems._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Glossopharyngeal Neuralgia

National Institute of Neurological Disorders and Stroke

Glossopharyngeal neuralgia (GN) is a rare pain syndrome that affects the glossopharyngeal nerve (the ninth cranial nerve that lies deep within the neck)_ and causes sharp, stabbing pulses of pain in the back of the throat and tongue, the tonsils, and the middle ear._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Glycogen Storage Disease

National Institute of Neurological Disorders and Stroke

Pompe disease is a rare (estimated at 1 in every 40,000 births), inherited and often fatal disorder that disables the heart and skeletal muscles._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Gullain Barre Syndrome

Gullain Barre Syndrome Support Group

We are a registered charity based in the United Kingdom that offers support and information to those affected by Guillain-Barr_ syndrome, CIDP and other dysimmune neuropathies throughout Britain and Ireland.

Location: National
Address: Ground Floor, Woodholme house, Heckington Business Park, Station Road, Heckington, Sleaford, NG34 9JH
Telephone: 01529 469910
Email: admin@gbs.org.uk
Website: www.gbs.org.uk

Hallervorden-Spatz disease

National Institute of Neurological Disorders and Stroke

Neurodegeneration with brain iron accumulation (NBIA) is a rare, inherited, neurological movement disorder characterized by an abnormal accumulation of iron in the brain and progressive degeneration of the nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Head injuries

Headway Mid Staffs

Headway House day activity centre for head injured people, providing a meeting place with facilities for improving domestic and educational skills.

Location: Staffordshire
Address: Rugeley Physically Handicapped Association, Church Street, Rugeley
Telephone: 01785 228493
Email: jsanderse@btinternet.com
Website: www.headway.org.uk

Head Injuries

Headway North Staffordshire

Support group for head injured and their families and carers

Location: Staffordshire
Address: Headway House, Elder Road, Cobridge Staffordshire, ST6 2JE
Telephone: 01782 280952
Email:
Website: www.headway.org.uk

Hemicrania Continua

National Institute of Neurological Disorders and Stroke

Hemicrania continua is a chronic and persistent form of headache marked by continuous pain that varies in severity, always occurs on the same side of the face and head, and is superimposed with additional debilitating symptoms. _on the continuous but fluctuating pain are occasional attacks of more severe pain. _

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hemifacial Spasm

National Institute of Neurological Disorders and Stroke

Hemifacial spasm is a neuromuscular disorder characterized by frequent involuntary contractions (spasms) of the muscles on one side (hemi-) of the face

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hemiplegia

Hemihelp

Location: National
Address: 6 Market Road, London. N7 9PW.
Telephone: 0845 123 2372
Email: support@hemihelp.org.uk
Website: www.hemihelp.org.uk

Hereditary Neuropathies

National Institute of Neurological Disorders and Stroke

Hereditary neuropathies are a group of inherited disorders affecting the peripheral nervous system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hereditary Spastic Paraplegia

National Institute of Neurological Disorders and Stroke

Hereditary spastic paraplegia (HSP), also called familial spastic paraparesis (FSP), refers to a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Heredopathia atactica polyneuritiformis

National Institute of Neurological Disorders and Stroke

Adult Refsum disease (ARD) is a rare genetic disease that causes weakness or numbness of the hands and feet (peripheral neuropathy). _

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Herpes zoster

National Institute of Neurological Disorders and Stroke

Shingles (herpes zoster) is an outbreak of rash or blisters on the skin that is caused by the same virus that causes chickenpox † the varicella-zoster virus.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Herpes zoster oticus

National Institute of Neurological Disorders and Stroke

Herpes zoster oticus, also called Ramsay Hunt Syndrome or Ramsay Hunt Syndrome type II, is a common complication of shingles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hirayama syndrome

National Institute of Neurological Disorders and Stroke

Monomelic amyotrophy (MMA) is characterized by progressive degeneration and loss of motor neurons, the nerve cells in the brain and spinal cord that are responsible for controlling voluntary muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Holmes-Adie syndrome

National Institute of Neurological Disorders and Stroke

Holmes-Adie syndrome (HAS) is a neurological disorder affecting the pupil of the eye and the autonomic nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hughes Syndrome

Hughes Syndrome Foundation

Antiphospholipid syndrome (APS) is an autoimmune disorder caused when antibodies -- immune system cells that fight off bacteria and viruses -- mistakenly attack healthy body tissues and organs. Hughes syndrome Foundation aims to .achieve earlier diagnosis and the best possible treatment for patients by: informing doctors, nurses and GPs about Hughes syndrome and raising awareness in the media and general public .

Location: National
Address: The Hughes Syndrome Foundation, Conybeare House, Guy s' Hospital, London , SE1 9RT
Telephone: 020 7188 8217
Email: info@hughes-syndrome.org
Website: www.hughes-syndrome.org

Huntingtons Disease

Huntingtons Disease Association

Location: Nationwide
Address: PO Box 138, Telford, TF2 8WY
Telephone: 01952 606155
Email: sallphonenix@hda.org.uk
Website: www.hda.org.uk

Huntingtons Disease

Huntingtons Disease Association

The Huntington's Disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's disease families.

Location: Staffordshire
Address: PO Box 138, Telford, TF2 8WY
Telephone: 1782642905
Email: satams@btinternet.com

Hydranencephaly

National Institute of Neurological Disorders and Stroke

Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hydrocephalus

National Institute of Neurological Disorders and Stroke

Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hydrocephalus – Normal Pressure

National Institute of Neurological Disorders and Stroke

Normal pressure hydrocephalus (NPH) is an abnormal buildup of cerebrospinal fluid (CSF) in the brain's ventricles, or cavities.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hydromyelia

National Institute of Neurological Disorders and Stroke

Hydromyelia refers to an abnormal widening of the central canal of the spinal cord that creates a cavity in which cerebrospinal fluid (commonly known as spinal fluid) can accumulate._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hypersomnia

National Institute of Neurological Disorders and Stroke

Hypersomnia is characterized by recurrent episodes of excessive daytime sleepiness or prolonged nighttime sleep.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hypertonia

National Institute of Neurological Disorders and Stroke

Hypertonia is a condition in which there is too much muscle tone so that arms or legs, for example, are stiff and difficult to move. _

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Hypotonia

National Institute of Neurological Disorders and Stroke

Hypotonia is a medical term used to describe decreased muscle tone. _Normally, even when relaxed, muscles have a very small amount of contraction that gives them a springy feel and provides some resistance to passive movement.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Idiopathic Intracranial Hypertension

IIH UK

Idiopathic Intracranial Hypertension (IIH), is a neurological condition defined by increased intracranial pressure around the brain without the presence of tumour or disease. The IIH UK website is a source of information for IIH _ Idiopathic Intracranial Hypertension, and links to resources and information about IIH.

Location: National
Address: IIH UK,64a Broadsands Drive, Gosport, Hants, PO12 2SD
Telephone:
Email:
Website: www.iih.org.uk

Immune-Mediated encephalomyelitis

National Institute of Neurological Disorders and Stroke

Acute disseminated encephalomyelitis (ADEM) is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin _ the protective covering of nerve fibers._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Inclusion body myositis

National Institute of Neurological Disorders and Stroke

Inclusion body myositis (IBM) is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic, progressive muscle inflammation accompanied by muscle weakness._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Incontinentia pigmenti

National Institute of Neurological Disorders and Stroke

Incontinentia pigmenti (IP) is an inherited disorder of skin pigmentation that is also associated with abnormalities of the teeth, skeletal system, eyes, and central nervous system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Infantile Hypotonia

National Institute of Neurological Disorders and Stroke

Hypotonia is a medical term used to describe decreased muscle tone. _Normally, even when relaxed, muscles have a very small amount of contraction that gives them a springy feel and provides some resistance to passive movement.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Infantile Neuroaxonal Dystrophy

National Institute of Neurological Disorders and Stroke

Infantile neuroaxonal dystrophy (INAD) is a rare inherited neurological disorder. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Infantile Refsum disease

National Institute of Neurological Disorders and Stroke

Infantile Refsum disease (IRD) is a medical condition within the Zellweger spectrum of perixisome biogenesis disorders (PBDs), inherited genetic disorders that damage the white matter of the brain and affect motor movements._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Infantile spasms

National Institute of Neurological Disorders and Stroke

An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Inflammatory myopathy

National Institute of Neurological Disorders and Stroke

The inflammatory myopathies are a group of diseases, with no known cause, that involve chronic muscle inflammation accompanied by muscle weakness._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Intestinal Lipodystrophy

National Institute of Neurological Disorders and Stroke

Whipple's disease is a multi-system infectious bacterial disease that interferes with the body's ability to metabolize fats.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Intracranial cyst

National Institute of Neurological Disorders and Stroke

Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord._ _

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Intracranial hypertension

National Institute of Neurological Disorders and Stroke

Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Isaac’s Syndrome

National Institute of Neurological Disorders and Stroke

Isaac's syndrome (also known as neuromyotonia, Isaac-Mertens syndrome, continuous muscle fiber activity syndrome, and quantal squander syndrome) is a rare neuromuscular disorder caused by hyperexcitability and continuous firing of the peripheral nerve axons that activate muscle fibers.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Krabbe disease

National Institute of Neurological Disorders and Stroke

Krabbe disease is a rare, inherited degenerative disorder of the central and peripheral nervous systems._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Kugelberg-Welander disease

National Institute of Neurological Disorders and Stroke

Spinal Muscular Atrophy (SMA) Types I, II, and III belong to a group of hereditary diseases that cause weakness and wasting of the voluntary muscles in the arms and legs of infants and children.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Kuru

National Institute of Neurological Disorders and Stroke

Kuru is a rare and fatal brain disorder that occurred at epidemic levels during the 1950s-60s among the Fore people in the highlands of New Guinea.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lambert-Eaton myasthenic syndrome

National Institute of Neurological Disorders and Stroke

Lambert-Eaton myasthenic syndrome (LEMS) is a disorder of the neuromuscular junction-the site where nerve cells meet muscle cells and help activate the muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lateral Femoral Cutaneous Nerve Entrapment

National Institute of Neurological Disorders and Stroke

Meralgia paresthetica is a disorder characterized by tingling, numbness, and burning pain in the outer side of the thigh.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Leigh’s disease

National Institute of Neurological Disorders and Stroke

Leigh's disease is a rare inherited neurometabolic disorder that affects the central nervous system. This progressive disorder begins in infants between the ages of three months and two years._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lennox-Gastaut syndrome

National Institute of Neurological Disorders and Stroke

Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lesch-Nyhan syndrome

National Institute of Neurological Disorders and Stroke

Lesch-Nyhan syndrome (LNS) is a rare, inherited disorder caused by a deficiency of the enzyme hypoxanthine-guanine phosphoribosyltransferase (HPRT).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Leukodystrophy

National Institute of Neurological Disorders and Stroke

Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Levine-Critchley Syndrome

National Institute of Neurological Disorders and Stroke

Neuroacanthocytosis refers to a group of genetic conditions that are characterized by movement disorders and acanthocytosis (abnormal, spiculated red blood cells).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lewy body dementia

National Institute of Neurological Disorders and Stroke

Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia, associated with Parkinson's Disease/

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lipid Storage Diseases

National Institute of Neurological Disorders and Stroke

Lipid storage diseases are a group of inherited metabolic disorders in which harmful amounts of fatty materials (lipids) accumulate in various tissues and cells in the body._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lipoid Proteinosis

National Institute of Neurological Disorders and Stroke

Lipoid proteinosis (LP) is a rare disease that affects the skin and the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lissencephaly

National Institute of Neurological Disorders and Stroke

Lissencephaly, which literally means "smooth brain," is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex and an abnormally small head (microcephaly).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Locked-In syndrome

National Institute of Neurological Disorders and Stroke

Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lou Gehrig’s disease (See amyotrophic lateral sclerosis)

National Institute of Neurological Disorders and Stroke

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease or classical motor neuron disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lupus – Neurological Sequelae

National Institute of Neurological Disorders and Stroke

Lupus (also called systemic lupus erythematosus) is a disorder of the immune system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Lyme disease – Neurological Sequelae

National Institute of Neurological Disorders and Stroke

Lyme disease is caused by a bacterial organism that is transmitted to humans via the bite of an infected tick.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Machado-Joseph disease (Spinocerebellar ataxia type 3)

National Institute of Neurological Disorders and Stroke

Machado-Joseph disease (MJD), which is also called spinocerebellar ataxia type 3, is a rare hereditary ataxia

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Melkersson-Rosenthal syndrome

National Institute of Neurological Disorders and Stroke

Melkersson-Rosenthal syndrome is a rare neurological disorder characterized by recurring facial paralysis, swelling of the face and lips (usually the upper lip), and the development of folds and furrows in the tongue.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Menieres disease

National Institute of Neurological Disorders and Stroke

M_nire's disease_/me_n_j__rz/[1]_is a disorder of the_inner ear_that can affect_hearing_and_balance_to a varying degree. It is characterized by episodes of_vertigo, low-pitched_tinnitus, and hearing loss.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Meningitis

Meningitis Trust

We have been helping people rebuild their lives after meningitis since 1986 and have a team of specialist community support workers across the UK, reaching out to people however, whenever and wherever they need us.

Location: National
Address: Fern House, Bath Road, Stroud, Gloucestershire GL5 3TJ
Telephone: 01453 768000
Email: info@meningitis-trust.org
Website: www.meningitis-trust.org

Menkes disease

National Institute of Neurological Disorders and Stroke

Menkes disease is caused by a defective gene named ATPTA1 that regulates the metabolism of copper in the body.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Metachromatic leukodystrophy

National Institute of Neurological Disorders and Stroke

Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Microcephaly

National Institute of Neurological Disorders and Stroke

Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Micropsia

National Institute of Neurological Disorders and Stroke

Micropsia_is a condition affecting human_visual perception_in which objects are perceived to be smaller than they actually are.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Migraine

Migraine Trust

We are committed to supporting people living with migraine by providing them and their families with evidence based information. We seek to raise migraine as a serious public health issue.

Location: National
Address: 52-53 Russell Square London WC1B 4HP
Telephone: 020 7631 6970
Email: info@migrainetrust.org
Website: www.migrainetrust.org

Miller Fisher syndrome

National Institute of Neurological Disorders and Stroke

Miller Fisher syndrome is a rare, acquired nerve disease that is considered to be a variant of Guillain-Barr_ syndrome.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Mini-stroke (transient ischemic attack, TIA)

National Institute of Neurological Disorders and Stroke

A transient ischemic attack (TIA) is a transient stroke that lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted. TIA symptoms, which usually occur suddenly, are similar to those of stroke but do not last as long.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Mitochondrial myopathy

National Institute of Neurological Disorders and Stroke

Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the mitochondria†small, energy-producing structures that serve as the cells' "power plants."

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Moebius syndrome

National Institute of Neurological Disorders and Stroke

Moebius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Monomelic amyotrophy

National Institute of Neurological Disorders and Stroke

Monomelic amyotrophy (MMA) is characterized by progressive degeneration and loss of motor neurons, the nerve cells in the brain and spinal cord that are responsible for controlling voluntary muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Motor Neurone Disease

Motor Neurone Disease Association

Provides information, advice and support to anyone affected by motor neurone disease.

Location: Staffordshire
Address: PO Box 2029, Stafford, ST17 0HJ
Telephone: 01785 254176
Email: jackie.dornfordmay@mndassociation.org
Website: www.mndassociation.org

Moyamoya disease

National Institute of Neurological Disorders and Stroke

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Mucolipidoses

National Institute of Neurological Disorders and Stroke

The mucolipidoses (ML) are a group of inherited metabolic diseases that affect the bodys ability to carry out the normal turnover of various materials within cells. In ML, abnormal amounts of carbohydrates and fatty materials (lipids) accumulate in cells.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Mucopolysaccharidoses

National Institute of Neurological Disorders and Stroke

The mucopolysaccharidoses are a group of inherited metabolic diseases in which a defective or missing enzyme causes large amounts of complex sugar molecules to accumulate in harmful amounts in the body's cells and tissues._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Multi-infarct dementia

National Institute of Neurological Disorders and Stroke

Multi-infarct dementia (MID) is a common cause of memory loss in the elderly._ MID is caused by multiple strokes (disruption of blood flow to the brain).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Multifocal motor neuropathy

National Institute of Neurological Disorders and Stroke

Multifocal motor neuropathy is a progressive muscle disorder characterized by muscle weakness in the hands, with differences from one side of the body to the other in the specific muscles involved.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Multiple Sclerosis

Staffordshire Therapeutic Independent Nerological Group STING

An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted._We are a local Branch, supported by the National MS Society

Location: Nationwide
Address: Unit 22B Whitebridge Estate,Whitebridge Lane Stone ST15 8LO
Telephone: 01785 611144
Email:

Multiple Sclerosis

Multiple Sclerosis Society _ Derby MS Activity Centre

An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted._ Local Branch, supported by the National MS Society

Location: Staffordshire East
Address: Lilian Prime House, 7 Enterprise Way, Jubilee Business Park (off stores Road) Derby, DE21 4BB
Telephone: 01332 622810
Email: centre@msderby.org.uk
Website: www.msderby.org.uk

Multiple Sclerosis

M&S Society North Staffordshire Branch

An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. MSRC supports anyone affected by MS

Location: Staffordshire North
Address:
Telephone: 07702 493 001
Email:

Multiple Sclerosis

Burton Branch MS Society

Location: Staffordshire, East
Address: Burton on Trent
Telephone: 01283 812945
Email:
Website: www.mssociety.org.uk

Multiple Sclerosis

Tamworth/Lichfield Branch MS Society

Location: Staffordshire, South
Address: c/o 50 Laurel Avenue, Polesworth, Tamworth, Staffs
Telephone: 01827 895719
Email: tamandlichms@onetel.com
Website: www.mssociety.org.uk

Multiple Sclerosis

M&S Society Stafford & District Branch,

An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted._We are a local Branch, supported by the National MS Society

Location: Staffordshire, Stafford
Address: 131-141 North Walls, Stafford, Staffordshire, ST16 3AD
Telephone: 01785 617045
Email:
Website: www.mssociety.org

Multiple Sclerosis

SAMS Staffordshire Branch of MS Society, SAMS centre Unit 22B Whitebridge Way Whitebridge Estate , ST15 8LQ

Location: Staffordshire, Stone
Address:
Telephone: 01785 6816688
Email: eg-sams@ntlworld.com

Multiple system atrophy

Sarah Matheson Trust

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. Help and advice, Specialist Nurses, information etc

Location: Nationwide
Address: Box 200, St Marys Hospital, Praed Street, London, W2 1NY
Telephone: 0207 886 1520
Email: office@msaweb.co.uk
Website: www.msatrust.org.uk

Muscular Dystrophy

Muscular Dystrophy Campaign

The muscular dystrophies (MD) are a group of more than 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles . we fund research and provide practical information, advice and emotional support for individuals with muscular dystrophy and other related conditions, their carers and families

Location: Nationwide
Address: 7-11 Prescott Place, London, SW4 6BS
Telephone: 020 7720 8055
Email: info@muscular-dystrophy.org
Website: www.muscular-dystrophy.org

Myalgic encephalomyelitis

ME Association

The group has monthly social meetings at three convenient locations in Rugeley, Stafford and Tamworth. New members, potential members and visitors are very welcome at these meetings. Please enquire about dates and venues using the contact details given above. Messages may be submitted through our website using the Contact-Us button.

Location: Staffordshire
Address: Rugeley, Stafford and Tamworth
Telephone:
Email: patrick.kilgallen@ntlworld.com
Website: www.meassociation.org.uk

Myalgic encephalomyelitis

ME Association

Location: Staffordshire
Address: The Chase Inn, Hagley Road, Rugeley. Third Thursday of each month. 12:15pm onwards
Telephone:
Email:

Myalgic encephalomyelitis

ME Association

Location: Staffordshire
Address: The Polite Vicar, 600 Etruria Road, Basford, Newcastle-Under-Lyme, Third Monday of each month, 12:00 pm onwards (From April 2011 onwards)
Telephone:
Email:

Myalgic encephalomyelitis

ME Association

Location: Staffordshire
Address: The Holmcroft, Holmcroft Road, Stafford, First Thursday of each month, 12:15pm onwards
Telephone:
Email:

Myalgic encephalomyelitis

ME Association

Location: Staffordshire
Address:
Telephone:
Email:

Myasthenia – Congenital

National Institute of Neurological Disorders and Stroke

All forms of myasthenia are due to problems in the communication between nerve cells and muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Myasthenia gravis

Myasthenia Gravis Association

The MGA acts as a contact point putting sufferers and their families in touch with each other so that they do not feel isolated in dealing with this rare disease. The association also puts members in touch with other appropriate agencies for any specific problems they are facing, for example problems with benefits.

Location: National
Address: The College Business Centre, Uttoxeter New Road, Derby Derbyshire DE223WZ
Telephone:
Email: info@mga-charity.org This e-mail address is being protected from spambots. You need JavaScript enabled to view it.
Website: www.mgauk.org

Myoclonic Encephalopathy of infants

National Institute of Neurological Disorders and Stroke

Opsoclonus myoclonus is a rare neurological disorder characterized by an unsteady, trembling gait, myoclonus (brief, shock-like muscle spasms), and opsoclonus (irregular, rapid eye movements).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Narcolepsy

Narcolepsy Association UK

People with narcolepsy and children in particular face huge challenges at home, in education and potentially later in the workplace. The charity is working with a number of families to help them determine the best ways to manage this intrusive and life changing condition.

Location: National
Address: PO Box 13842, Penicuik, EH26 8WX
Telephone: 0845 450 0394
Email: info@narcolepsy.org.uk
Website: www.narcolepsy.org.uk

Neuroacanthocytosis

National Institute of Neurological Disorders and Stroke

Neuroacanthocytosis refers to a group of genetic conditions that are characterized by movement disorders and acanthocytosis (abnormal, spiculated red blood cells). Four syndromes are classified as neuroacanthocytosis:

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neurodegeneration with Brain Iron Accumulation

National Institute of Neurological Disorders and Stroke

Neurodegeneration with brain iron accumulation (NBIA) is a rare, inherited, neurological movement disorder characterized by an abnormal accumulation of iron in the brain and progressive degeneration of the nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neurofibromatosis

Neurofibromatosis Association

The Neuro Foundations vision is to improve and support the lives of those affected by Neurofibromatosis. Everyday a baby is born in the UK with Neurofibromatosis. There are over 25,000 people in the UK affected by the condition and as yet, there is no cure.

Location: National
Address: Quayside House, 38 High Street, Kingston Upon Thames, Surrey KT1 1HL
Telephone: 020 8439 1234
Email: info@nfauk.org
Website: www.nfauk.org

Neuroleptic malignant syndrome

National Institute of Neurological Disorders and Stroke

Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neurological Complications of AIDS

National Institute of Neurological Disorders and Stroke

AIDS is primarily an immune system disorder caused by the human immunodeficiency virus (HIV), but it can also affect the nervous system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neuromyelitis Optica

NMO UK

Neuromyelitis Optica (NMO) (previously known as Devic's disease) is an autoimmune condition characterised by relapses (attacks) of the optic nerves (optic neuritis) and spinal cord (transverse myelitis). The NHS National Specialised Commissioning Team in the UK has acknowledged NMO as a rare neurological condition that requires specialist expertise and has funded: The Walton Centre in Liverpool, and John Radcliffe Hospital at Oxford

Location: National
Address: Lower Lane, Fazakerley, Liverpool L9 7LJ
Telephone: 0151 529 5420
Email: nmo.advice@thewaltoncentre.nhs.uk
Website: www.nmouk.nhs.uk

Neuromyotonia

National Institute of Neurological Disorders and Stroke

Isaac's syndrome (also known as neuromyotonia, Isaac-Mertens syndrome, continuous muscle fiber activity syndrome, and quantal squander syndrome) is a rare neuromuscular disorder caused by hyperexcitability and continuous firing of the peripheral nerve axons that activate muscle fibers.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neuronal ceroid lipofuscinosis

National Institute of Neurological Disorders and Stroke

Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neuronal migration disorders

National Institute of Neurological Disorders and Stroke

Neuronal migration disorders (NMDs) are a group of birth defects caused by the abnormal migration of neurons in the developing brain and nervous system

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neuropathy

The Neuropathy Trust

Peripheral Neuropathy [pron. - new-rop-athy] is a generic phrase denoting functional disturbances and/or pathological changes in the peripheral nervous system.

Location: National
Address: The Neuropathy Trust, PO Box 26, Nantwich, Cheshire, CW5 5FP
Telephone:
Email:
Website: http://neurocentre.com/Neuropathy

Neurosarcoidosis

National Institute of Neurological Disorders and Stroke

Neurosarcoidosis is a manifestation of sarcoidosis in the nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neurosyphilis

National Institute of Neurological Disorders and Stroke

Neurosyphilis is a disease of the coverings of the brain, the brain itself, or the spinal cord. It can occur in people with syphilis, especially if they are left untreated. _s._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Neurotoxicity

National Institute of Neurological Disorders and Stroke

Neurotoxicity occurs when the exposure to natural or manmade toxic substances (neurotoxicants) alters the normal activity of the nervous system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Niemann-Pick disease

National Institute of Neurological Disorders and Stroke

Niemann-Pick disease (NP) refers to a group of inherited metabolic disorders known as lipid storage diseases.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Non-Epilectic Attack Disorder

NEAD Trust

Non Epileptic Seizures resemble epileptic seizures superficially but are not associated with epileptic activity in the brain. Non Epileptic Seizures (NES) are interpreted as an unconscious response to psychological distress and as such are beyond the control of the person suffering from them.

Location: National
Address: NEAD Trust, 57 Burton Street, Hillsborough, Sheffield, S6 2HH
Telephone:
Email: admin@neadtrust.co.uk
Website: www.neadtrust.co.uk

O’Sullivan-McLeod syndrome

National Institute of Neurological Disorders and Stroke

Monomelic amyotrophy (MMA) is characterized by progressive degeneration and loss of motor neurons, the nerve cells in the brain and spinal cord that are responsible for controlling voluntary muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Occipital Neuralgia

National Institute of Neurological Disorders and Stroke

Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Ohtahara syndrome

Clinical Nurse Specialist in Epilepsy

Ohtahara syndrome is rare and the earliest-appearing age-related epileptic encephalophy, with seizure onset occurring within the first three months of life, and often in the first ten days._We support people with epilepsy through our freephone telephone helpline, email helpline, text message helpline, Twitter helpline, local branches_throughout the UK, online community, conferences for people with epilepsy_and their families, accredited volunteers, Sapphire epilepsy specialist nurse scheme

Location: Staffordshire
Address: Department of Neurology, Mid Staffordshire NHS Foundation Trust, Stafford Hospital, Weston Road, Stafford, ST16 3SA
Telephone: 01785 239230 ext. 4239
Email: phil.tittensor@midstaffs.co.uk
Website: www.epilepsy.org.uk

Olivopontocerebellar atrophy

National Institute of Neurological Disorders and Stroke

Olivopontocerebellar atrophy (OPCA) is a term that describes the degeneration of neurons in specific areas of the brain

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Opsoclonus myoclonus syndrome

National Institute of Neurological Disorders and Stroke

Opsoclonus myoclonus is a rare neurological disorder characterized by an unsteady, trembling gait, myoclonus (brief, shock-like muscle spasms), and opsoclonus (irregular, rapid eye movements).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Optic neuritis

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Otosclerosis

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Palinopsia

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pantothenate Kinase-Associated Neurodegeneration

National Institute of Neurological Disorders and Stroke

Neurodegeneration with brain iron accumulation (NBIA) is a rare, inherited, neurological movement disorder characterized by an abnormal accumulation of iron in the brain and progressive degeneration of the nervous system._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Paramyotonia Congenita

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Parkinson’s Disease

Parkinson's UK

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire Penkridge
Address: Jenny Richardson
Telephone: 01785 712008
Email: richardson12@btinternet.com
Website: www.parkinsons.org.uk

Parkinson’s Disease

Parkinson's UK

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire Tamworth
Address: Sue Nerny
Telephone: 01827 54991
Email: suenerny@yahoo.co.uk
Website: www.parkinsons.org.uk

Parkinson’s Disease

Parkinson's UK

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire, Chase
Address: Group Lead Geoff Chandler
Telephone: 01543 425819
Email: chaseparkinsons@gmail.com
Website: www.parkinsons.org.uk

Parkinson’s Disease (Deep Brain Stimulation for Parkinson’s Disease)

National Institute of Neurological Disorders and Stroke

Deep brain stimulation (DBS) is a surgical procedure used to treat a variety of disabling neurological symptoms†most commonly the debilitating symptoms of Parkinsons disease (PD), such as tremor, rigidity, stiffness, slowed movement, and walking problems._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Parkinsons Disease

Burton & District Parkinsons Disease Society Support Group

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire, Burton on Trent
Address: 26 Beamhill Road, Burton on Trent, Staffs, DE13 0AE
Telephone: 01283 536165
Email: rockerandjb@btinternet.com
Website: www.parkinsons.org.uk

Parkinsons Disease

Parkinsons Disease Society _ North Staffordshire

To help and campaign for people affected by Parkinsons. Meetings on 2nd Tuesday 2.00 - 4.00 Martin Heath Hall, Christchurch Lane, LICHFIELD, WS13 8AY

Location: Staffordshire, Leek
Address: Johnson Sheltered Housing, Mount Pleasant, Clerk Bank, Leek, Staffordshire ST13 5EX - See more at: http://www.parkinsons.org.uk/local-support-groups/regions/north-staffordshire-branch#sthash.SlnuBNir.dpuf
Telephone: 01782 267442
Email:
Website: www.parkinsons.org.uk

Parkinsons Disease

Parkinsons Disease Society _ North Staffordshire

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire, Newcastle
Address: Pentecostal Church, Heath Street, Chesterton, Newcastle ST5 7PY
Telephone: 01782 361158
Email:
Website: www.parkinsons.org.uk

Parkinsons Disease

Parkinsons Disease Society _ North Staffordshire

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire, Stafford
Address: St Bertelins Church Hall Holmcroft Road Stafford ST16 1JF
Telephone: 01785 817866
Email: hilda.sharp@hotmail.co.uk
Website: www.parkinsons.org.uk

Parkinsons Disease

Parkinsons Disease Society _ North Staffordshire

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire, Stoke on Trent
Address: Church Of Our Lady & St Michael Bucknall Old Road Stoke-on-Trent ST1 2AL
Telephone: 01782 518072
Email: denise.tucker3@btinternet.com
Website: www.parkinsons.org.uk

Parkinsons Disease

Parkinsons Disease Society _ Lichfield Branch

Help and support for people with Parkinson's Disease, their families and carers

Location: Staffordshire,Lichfield
Address: Chair, Margaret Davies. Jackie Murrall BVSO
Telephone: 01543 264465
Email: bvso2@parkinsons.org.uk
Website: www.parkinsons.org.uk

Paroxysmal attacks

National Institute of Neurological Disorders and Stroke

Paroxysmal choreoathetosis is a movement disorder characterized by episodes or attacks of involuntary movements of the limbs, trunk, and facial muscles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Parry-Romberg syndrome

National Institute of Neurological Disorders and Stroke

Parry-Romberg syndrome is a rare disorder characterized by slowly progressive deterioration (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy), usually the left side.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pelizaeus-Merzbacher disease

National Institute of Neurological Disorders and Stroke

Pelizaeus-Merzbacher disease (PMD) is a rare, progressive, degenerative central nervous system disorder in which coordination, motor abilities, and intellectual function deteriorate.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pena Shokeir II Syndrome

National Institute of Neurological Disorders and Stroke

Cerebro-oculo-facio-skeletal syndrome (COFS) is a pediatric, genetic, degenerative disorder that involves the brain and the spinal cord.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Perineural Cysts

National Institute of Neurological Disorders and Stroke

Tarlov cysts are sacs filled with cerebrospinal fluid that most often affect nerve roots in the sacrum, the group of bones at the base of the spine.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Periodic Paralyses

National Institute of Neurological Disorders and Stroke

Familial periodic paralyses are a group of inherited neurological disorders caused by mutations in genes that regulate sodium and calcium channels in nerve cells.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Peripheral neuropathy

National Institute of Neurological Disorders and Stroke

More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend on the type of nerves -- motor, sensory, or autonomic -- that are damaged.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Periventricular Leukomalacia

National Institute of Neurological Disorders and Stroke

Periventricular leukomalacia (PVL) is characterized by the death of the white matter of the brain due to softening of the brain tissue.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pervasive developmental disorders

National Institute of Neurological Disorders and Stroke

The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Phytanic acid storage disease

National Institute of Neurological Disorders and Stroke

Adult Refsum disease (ARD) is a rare genetic disease that causes weakness or numbness of the hands and feet (peripheral neuropathy).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pick’s disease

National Institute of Neurological Disorders and Stroke

Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Piriformis Syndrome

National Institute of Neurological Disorders and Stroke

Piriformis syndrome is a rare neuromuscular disorder that occurs when the piriformis muscle compresses or irritates the sciatic nerve-the largest nerve in the body.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

PMG

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Polio

British Polio Fellowship

The British Polio Fellowship is a charity dedicated to helping, supporting and empowering approximately 120,000 people in the UK living with the effects of Polio and Post Polio Syndrome (PPS), a neurological condition. It provides information, welfare and support to those living with the effects to enable all to live full independent and integrated lives.

Location: National
Address: Eagle Office Centre, The Runway, South Ruislip, Middlesex, HA4 6SE
Telephone: 0800 018 0586
Email: info@britishpolio.org.uk
Website: www.britishpolio.org.uk

Polymicrogyria

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Polymyositis

National Institute of Neurological Disorders and Stroke

Polymyositis is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Polyneuropathy

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pompe Disease

National Institute of Neurological Disorders and Stroke

Pompe disease is a rare (estimated at 1 in every 40,000 births), inherited and often fatal disorder that disables the heart and skeletal muscles._ It is caused by mutations in a gene that makes an enzyme called acid alpha-glucosidase (GAA)._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Porencephaly

National Institute of Neurological Disorders and Stroke

Porencephaly is an extremely rare disorder of the central nervous system in which a cyst or cavity filled with cerebrospinal fluid develops in the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Post-Polio syndrome

National Institute of Neurological Disorders and Stroke

Post-polio syndrome (PPS) is a condition that affects polio survivors many years after recovery from an initial attack of the poliomyelitis virus. PPS is characterized by a further weakening of muscles that were previously affected by the polio infection.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Postherpetic Neuralgia (PHN)

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Postinfectious Encephalomyelitis

National Institute of Neurological Disorders and Stroke

Acute disseminated encephalomyelitis (ADEM) is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin _ the protective covering of nerve fibers._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Postural Hypotension

National Institute of Neurological Disorders and Stroke

Orthostatic hypotension is a sudden fall in blood pressure that occurs when a person assumes a standing position.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Postural Orthostatic Tachycardia Syndrome

National Institute of Neurological Disorders and Stroke

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Prader-Willi syndrome

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Primary Lateral Sclerosis

National Institute of Neurological Disorders and Stroke

Primary lateral sclerosis (PLS) is a rare neuromuscular disease with slowly progressive weakness in voluntary muscle movement.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Primary Progressive Aphasia

Speak Ability

Aphasia is an acquired communication disorder that impairs a persons ability to process language, but does not affect intelligence.

Location: National
Address: 1 Royal Street London SE1 7LL
Telephone: 080 8808 9572
Email: speakability@speakability.org.uk
Website: www.speakability.org.uk

Prion diseases

National Institute of Neurological Disorders and Stroke

Transmissible spongiform encephalopathies (TSEs), also known as prion diseases, are a group of rare degenerative brain disorders characterized by tiny holes that give the brain a "spongy" appearance.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Progressive hemifacial atrophy

National Institute of Neurological Disorders and Stroke

Parry-Romberg syndrome is a rare disorder characterized by slowly progressive deterioration (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy), usually the left side.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Progressive multifocal leukoencephalopathy

National Institute of Neurological Disorders and Stroke

Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin--the material that insulates nerve cells (neurons).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Progressive Supranuclear Palsy

The Progressive Supranuclear Palsy Group

The PSP Association offers advice, support and information to people living with PSP and CBD, while at the same time supporting research into treatments and ultimately a cure for these conditions.

Location: National
Address: PSP House, 167, Watling St West, Towcester, Northamptonshire. NN12 6BX.
Telephone: 01327 322410
Email: psp@pspassociation.org.uk
Website: www.pspeur.org

Prosopagnosia

National Institute of Neurological Disorders and Stroke

Prosopagnosia is a neurological disorder characterized by the inability to recognize faces._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pseudotoxoplasmosis syndrome

National Institute of Neurological Disorders and Stroke

Aicardi-Goutieres syndrome (AGS) is an inherited encephalopathy that affects newborn infants and usually results in severe mental and physical handicap.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Pseudotumor cerebri

National Institute of Neurological Disorders and Stroke

Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Psychogenic Movement

National Institute of Neurological Disorders and Stroke

Psychogenic movement is an unwanted muscle movement such as a spasm or tremor that is caused by an underlying psychological condition.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Ramsay Hunt syndrome type I

National Institute of Neurological Disorders and Stroke

Dyssynergia Cerebellaris Myoclonica refers to a collection of rare, degenerative, neurological disorders characterized by epilepsy, cognitive impairment, myoclonus, and progressive ataxia. Symptoms include seizures, tremor, and reduced muscle coordination.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Ramsay Hunt syndrome type II

National Institute of Neurological Disorders and Stroke

Herpes zoster oticus, also called Ramsay Hunt Syndrome or Ramsay Hunt Syndrome type II, is a common complication of shingles.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Rasmussen’s encephalitis

National Institute of Neurological Disorders and Stroke

Rasmussens encephalitis is a rare, chronic inflammatory neurological disease that usually affects only one hemisphere of the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Reflex neurovascular dystrophy

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Reflex Sympathetic Disorder

Arthritis Research UK

Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person develops a persistent (chronic) burning pain in one of their limbs.

Location: National
Address: Copeman House, St Mary's Gate, Chesterfield, Derbyshire, S41 7TD
Telephone: 0300 790 0400
Email: enquiries@arthritisresearchuk.org
Website: www.arthritisresearchuk.org

Refsum disease

National Institute of Neurological Disorders and Stroke

Adult Refsum disease (ARD) is a rare genetic disease that causes weakness or numbness of the hands and feet (peripheral neuropathy).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Repetitive stress injury

National Institute of Neurological Disorders and Stroke

Repetitive motion disorders (RMDs) are a family of muscular conditions that result from repeated motions performed in the course of normal work or daily activities.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Restless legs syndrome

National Institute of Neurological Disorders and Stroke

Restless legs syndrome (RLS) is a neurological disorder characterized by unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them for relief.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Retrovirus-associated myelopathy

National Institute of Neurological Disorders and Stroke

For several decades the term _tropical spastic paraparesis” (TSP) has been used to describe a chronic and progressive disease of the nervous system that affects adults living in equatorial areas of the world.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Rett Syndrome

Rett UK

CRPS/RSD is a neurological disorder that can occur after a minor injury, such as an ankle sprain. Rett syndrome is a severe, life long neurological disorder. Rett UK offers professional advice and support for families affected by Rett syndrome

Location: National
Address: Langham House West. Mill Street, Luton, LU1 2NA
Telephone: 01582 798 911
Email:
Website: www.rettuk.org

Reye’s syndrome

National Institute of Neurological Disorders and Stroke

Reye's syndrome (RS) is primarily a children's disease, although it can occur at any age. It affects all organs of the body but is most harmful to the brain and the liver--causing an acute increase of pressure within the brain and, often, massive accumulations of fat in the liver and other organs.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Rheumatic Encephalitis

National Institute of Neurological Disorders and Stroke

Sydenham chorea (SD) is a neurological disorder of childhood resulting from infection via Group A beta-hemolytic streptococcus (GABHS), the bacterium that causes rheumatic fever._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Rhythmic Movement Disorder

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Riley-Day Syndrome

National Institute of Neurological Disorders and Stroke

Dysautonomia refers to a disorder of autonomic nervous system (ANS) function.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Romberg syndrome

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Sacral Nerve Root Cysts

National Institute of Neurological Disorders and Stroke

Tarlov cysts are sacs filled with cerebrospinal fluid that most often affect nerve roots in the sacrum, the group of bones at the base of the spine.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Sandhoff Disease

National Institute of Neurological Disorders and Stroke

Sandhoff disease is a progressive neurodegenerative disorder characterised by an accumulation of GM2 gangliosides, particularly in neurons, and is clinically indistinguishable from Tay-Sachs disease.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Sarcoidosis

SILA

Our aim to help people with Sarcoidosis. We believe we can do that best by disseminating information about Sarcoidosis clearly and effectively. We use this website, and more specifically the links to the left of this, to do that.

Location: Nationwide
Address: c/o Department of Respiratory Medicine, 1st Floor, Cheyne Wing, King's College Hospital, Denmark Hill, London. SE5 9RS.
Telephone: 020 7237 5912
Email: info@sila.org.uk
Website: www.sila.org.uk

Schilder’s disease

ALD Life

If you or someone in your family has been diagnosed with Addison's Disease, please make sure to have a specific test for ALD gene. Unfortunately many endocrinologists are not aware of this link between Addison's and ALD. ALD is a terminal disorder. An early diagnosis could save a life! ALD Life is a patient support group for patients and families affected by Adrenoleukodystrophy (ALD

Location: National
Address: PO Box 43642, London, SE22 0XR
Telephone: 020 8473 7493
Email: info@aldlife.org.
Website: www.aldlife.org

Schizencephaly

National Institute of Neurological Disorders and Stroke

Schizencephaly, or "split brain," is a neurological disease caused by abnormal development of the brain, leading to the characteristic appearance of abnormal clefts in either one or both cerebral hemispheres.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Seitelberger Disease

National Institute of Neurological Disorders and Stroke

Infantile neuroaxonal dystrophy (INAD) is a rare inherited neurological disorder. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Seizure Disorder

National Institute of Neurological Disorders and Stroke

The epilepsies are a spectrum of brain disorders ranging from severe, life-threatening and disabling, to ones that are much more benign.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Semantic Dementia

National Institute of Neurological Disorders and Stroke

Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Septo-optic dysplasia

The Magic Foundation

Septo-optic dysplasia is the name given to the condition where a child is diagnosed with two or more of the following problems: optic nerve hypoplasia, midline brain abnormalities and pituitary gland abnormalities. The MAGIC Foundation is a national non-profit organization created to provide_support services for the families of children afflicted_with a wide variety of chronic_and/or critical disorders, syndromes and diseases_that affect a childs growth.

Location: International
Address: 6645 W. North Avenue, Oak Park, Illinois 60302
Telephone: 17083830808
Email: ContactUs@magicfoundation.org
Website: www.magicfoundation.org

Severe Myoclonic Epilepsy of Infancy (SMEI)

National Institute of Neurological Disorders and Stroke

Dravet syndrome, also called severe myoclonic epilepsy of infancy (SMEI), is a severe form of epilepsy._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Shaken Baby Syndrome

National Institute of Neurological Disorders and Stroke

Shaken baby syndrome is a type of inflicted traumatic brain injury that happens when a baby is violently shaken._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Shingles

Shingles Support Society

Shingles is an infection of a nerve and the skin around it. It is caused by the herpes varicella-zoster virus, which also causes chickenpox. The Shingles Support Society supplies information on shingles and post-herpetic neuralgia (PHN for short): what they are and how to treat them.

Location: National
Address: HVA, 41 North Road, London N7 9DP
Telephone: 8451232305
Email: Info@herpes.org.uk
Website: www.herpes.org.uk

Shy-Drager syndrome

Multiple System Atrophy Coalition

Multiple System Atrophy (MSA) is a rare, neurodegenerative disorder affecting multiple body systems.

Location: International
Address: 8311 Brier Creek Pkwy, St 105-434, Raleigh, NC, 27617
Telephone:
Email: info@curepsp.org
Website: http://www.msaawareness.org

Sj_gren’s syndrome

The British Sj_gren's Syndrome Association

Sj_grens Syndrome is the UKs second most common autoimmune rheumatic disease, yet the condition remains under recognised and frequently under treated.

Location: National
Address: PO Box 15040, Birmingham, B31 3DP
Telephone: 0121 478 1133
Email:
Website: http://www.bssa.uk.net

Sleep apnea

The Sleep Apnoea Trust Association

Sleep Apnoea is a serious condition where the muscles in the throat relax during sleep causing the sufferer to temporarily stop breathing. If untreated it can_occur hundreds of times in a night leading to daytime fatigue and other serious health problems.

Location: National
Address: The Sleep Apnoea Trust, Po Box 60, Chinnor, OX39 4XE
Telephone: 0845 038 0060
Email: Info@sleep-apnoea-trust.org
Website: http://www.sleep-apnoea-trust.org

Sleeping sickness

Centers for Disease Control and Prevention

Sleeping sickness is also known as trypanosomiasis or African sleeping sickness. It's caused by a small parasite that leads to a serious infection in the brain and the meninges (the covering of the brain and spinal cord). The disease develops slowly and if treatment is delayed, it usually proves fatal.

Location: International
Address: 1600 Clifton Rd. Atlanta, GA 30333, USA
Telephone: 001800-232-4636
Email: cdcinfo@cdc.gov
Website: http://www.cdc.gov/parasites/sleepingsickness/index.html

Snatiation

ObesityHelp Inc

Snatiation is a medical disorder characterized by uncontrollable bursts of sneezing brought on by fullness of the stomach, and typically observed in sufferers immediately after a large meal.

Location: International
Address: 8001 Irvine Center Drive, Suite 1270, Irvine, CA 92618
Telephone:
Email:
Website: http://www.obesityhelp.com

Sotos Syndrome

The Childgrowth Foundation

Sotos syndrome is an uncommon condition that affects approximately one in fourteen thousand of the population. It is one of several overgrowth syndromes and is also known as Cerebral Gigantism.

Location: National
Address: 21 Malvern Drive, Sutton Coldfield, B76 1PZ
Telephone: 020 8995 0257
Email: info@childgrowthfoundation.org
Website: http://www.childgrowthfoundation.org

Spasticity

Tamworth/Lichfield Branch MS Society

Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS.

Location: Staffordshire, South
Address: c/o 50 Laurel Avenue, Polesworth, Tamworth, Staffs
Telephone: 01827 895719
Email: tamandlichms@onetel.com
Website: www.mssociety.org.uk

Spina Bifida

Association for Spina Bifida & Hydrocephalus

Europe's largest organisation dedicated to supporting individuals and families as they face the challenges arising from spina bifida and hydrocephalus.

Location: Nationwide
Address: 42 Park Road, Peterborough, PE1 2UQ
Telephone: 01733 555988
Email:
Website: www.asbah.org

Spinal Cord Infarction

National Institute of Neurological Disorders and Stroke

Spinal cord infarction is a stroke either within the spinal cord or the arteries that supply it.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Spinal Cord Injury

National Institute of Neurological Disorders and Stroke

A spinal cord injury usually begins with a sudden, traumatic blow to the spine that fractures or dislocates vertebrae.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Spinal cord tumors

National Institute of Neurological Disorders and Stroke

Brain and spinal cord tumors are abnormal growths of tissue found inside the skull or the bony spinal column, which are the primary components of the central nervous system (CNS). B

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Spinal Dysraphism

Association for Spina Bifida & Hydrocephalus

Europe's largest organisation dedicated to supporting individuals and families as they face the challenges arising from spina bifida and hydrocephalus.

Location: Nationwide
Address: 42 Park Road, Peterborough, PE1 2UQ
Telephone: 01733 555988
Email:
Website: www.asbah.org

Spinal Injuries

Spinal Injuries Association

The service supports SIA members who are applying for Continuing Healthcare, or having their Continuing Healthcare reviewed.

Location: Nationwide
Address: SIA House, 2 Trueman Place, Oldbrook, Milton Keynes, MK6 2HH
Telephone: 0845 678 6633
Email:
Website: www.spinal.co.uk

Spinal muscular atrophy

The Jennifer Trust for Spinal Muscular Atrophy

We offer free confidential information, emotional support, practical advice and guidance to anyone affected by Spinal Muscular Atrophy who is living in the UK.

Location: Nationwide
Address: Elta House, Birmingham Road, Stratford upon Avon, CV37 0AQ
Telephone: 0870 7743651
Email: jennifer@jtsma.org.uk
Website: www.jtsma.org.uk

Spinocerebellar Degeneration

National Institute of Neurological Disorders and Stroke

Ataxia often occurs when parts of the nervous system that control movement are damaged.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Steele-Richardson-Olszewski syndrome

National Institute of Neurological Disorders and Stroke

Progressive supranuclear palsy (PSP) is a rare brain disorder that causes serious and progressive problems with control of gait and balance, along with complex eye movement and thinking problems.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Sticky blood syndrome

Arthritis Research

Were working to take the pain away from people living with all forms of arthritis and helping them to remain active. Well do this by funding high class research, educating health care professionals and providing information to people with arthritis and their carers.

Location: Nationwide
Address: Copeman House, St Mary's Gate, Chesterfield, Derbyshire, S41 7TD
Telephone: 0300 790 0400
Email: enquiries@arthritisresearchuk.org
Website: www.arthritisresearchuk.org

Stiff-person syndrome

National Institute of Neurological Disorders and Stroke

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Striatonigral Degeneration

National Institute of Neurological Disorders and Stroke

Striatonigral degeneration is a neurological disorder caused by a disruption in the connection between two areas of the brain-the striatum and the substantia nigra. These two areas work together to enable balance and movement.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Stroke

Lichfield Stroke Club

Any health professional can refer or survivors or carers can self refer. Multi lingual factsheets available contain information and advice. Co-ordinator assists clients with advice on benefits and other sources of financial support and in planned changes in lifestyle.

Location: Staffordshire Lichfield
Address: Lichfield Stroke Club, 102 Walsall Road, Lichfield, Staffordshire, WS13 8AF
Telephone: 01543 262440
Email:

Stroke

Stroke Association Family Carer and Support Co-ordinator

Location: Staffordshire South
Address: Stroke Neurological Unit, 1st Floor, Sheldon Unit, Good Hope Hospital, Rectory Road, Sutton Coldfield, West Midlands, B75 7RR
Telephone: 0121 424 9466
Email:
Website: www.stroke.org.uk

Stroke

Lichfield Stroke Club meeting place

Location: Staffordshire, Lichfield
Address: The Martin Heath Hall Christchurch Lane, Lichfield, WS13
Telephone: 0303 3033 100
Email:

Stroke

South Staffordshire Stroke Association

Location: Staffordshire, Lichfield
Address:
Telephone: 01543 576601
Email: Rachel.Cupitt@stroke.org.uk
Website: www.stroke.org.uk

Stroke

Stroke Association Stafford

Location: Staffordshire, Stafford
Address: Stafford, ST17 9NF
Telephone: 01543 576409
Email: gaynor.allen@stroke.org.uk
Website: www.stroke.org.uk/support/stafford

Stroke

Stroke Association

Support for Stroke survivors, re-enabling, clubs and grants

Location: staffordshire
Address: c/o Cannock Chase Hospital, Brunswick Road, Cannock, WS11 5XY
Telephone: 07712 327539
Email: helen.turnbull@stroke.org.uk
Website: Example Website

Sturge-Weber syndrome

National Institute of Neurological Disorders and Stroke

Sturge-Weber syndrome is a neurological disorder indicated at birth by a port-wine stain birthmark on the forehead and upper eyelid of one side of the face.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Subacute sclerosing panencephalitis

National Institute of Neurological Disorders and Stroke

Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder of children and young adults that affects the central nervous system (CNS).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Subarachnoid Haemorrhage

Headway

Headway is a charity set up to give help and support to people affected by brain injury.

Location: Staffordshire, South
Address: Sir Robert Peel Hospital in Mile Oak, Tamworth.
Telephone:
Email: Dawn.Perry@southstaffspct.nhs.uk
Website: www.headway.org.uk

Subcortical arterioschlerotic encephalopathy

National Institute of Neurological Disorders and Stroke

Binswanger's disease (BD), also called subcortical vascular dementia, is a type of dementia caused by widespread, microscopic areas of damage to the deep layers of white matter in the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

SUNCT Headache

National Institute of Neurological Disorders and Stroke

SUNCT-Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing-is a rare form of headache that is most common in men after age 50.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Superficial siderosis

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Sydenham’s Chorea (St Vitus Dance)

National Institute of Neurological Disorders and Stroke

Sydenham chorea (SD) is a neurological disorder of childhood resulting from infection via Group A beta-hemolytic streptococcus (GABHS), the bacterium that causes rheumatic fever.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Syncope

National Institute of Neurological Disorders and Stroke

Syncope is a medical term used to describe a temporary loss of consciousness due to the sudden decline of blood flow to the brain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Synesthesia

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Syringomyelia

National Institute of Neurological Disorders and Stroke

Hydromyelia refers to an abnormal widening of the central canal of the spinal cord that creates a cavity in which cerebrospinal fluid (commonly known as spinal fluid) can accumulate

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Systemic Lupus Erythematosus

National Institute of Neurological Disorders and Stroke

Lupus (also called systemic lupus erythematosus) is a disorder of the immune system.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tabes Dorsalis

National Institute of Neurological Disorders and Stroke

Tabes dorsalis is a slow degeneration of the nerve cells and nerve fibers that carry sensory information to the brain, the result of an untreated syphilis infection.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tardive dyskinesia

National Institute of Neurological Disorders and Stroke

Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tarlov cyst

National Institute of Neurological Disorders and Stroke

Tarlov cysts are sacs filled with cerebrospinal fluid that most often affect nerve roots in the sacrum, the group of bones at the base of the spine.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tarsal tunnel syndrome

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tay-Sachs disease

National Institute of Neurological Disorders and Stroke

Tay-Sachs disease is a fatal genetic lipid storage disorder

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Temporal arteritis

National Institute of Neurological Disorders and Stroke

Vasculitis is an inflammation of blood vessels, which includes the veins, arteries, and capillaries.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tethered spinal cord syndrome

National Institute of Neurological Disorders and Stroke

Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Thomsen disease

National Institute of Neurological Disorders and Stroke

Myotonia congenita is an inherited neuromuscular disorder characterized by the inability of muscles to quickly relax after a voluntary contraction.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Thoracic outlet syndrome

National Institute of Neurological Disorders and Stroke

TOS is an umbrella term that encompasses three related syndromes that involve compression of the nerves, arteries, and veins in the lower neck and upper chest area and cause pain in the arm, shoulder, and neck.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Thyrotoxic Myopathy

National Institute of Neurological Disorders and Stroke

Thyrotoxic myopathy is a neuromuscular disorder that may accompany hyperthyroidism (Graves' disease, caused by overproduction of the thyroid hormone thyroxine).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tic Douloureux

National Institute of Neurological Disorders and Stroke

Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that causes extreme, sporadic, sudden burning or shock-like face pain.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Todd’s paralysis

National Institute of Neurological Disorders and Stroke

Todd's paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Tourette syndrome

Tourettes Action

We offer information and support to people with Tourettes and those living with people with TS.

Location: Nationwide
Address: Kings Court, 91 - 93 High Street, Camberley, Surrey, GU15 3RN
Telephone: 01276 482903
Email: admin@tourettes-action.org.uk
Website: www.tourettes-action.org.uk

Toxic encephalopathy

National Institute of Neurological Disorders and Stroke

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Transient ischemic attack

National Institute of Neurological Disorders and Stroke

A transient ischemic attack (TIA) is a transient stroke that lasts only a few minutes.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Transmissable Spongiform encephalpathies

National Institute of Neurological Disorders and Stroke

Transmissible spongiform encephalopathies (TSEs), also known as prion diseases, are a group of rare degenerative brain disorders characterized by tiny holes that give the brain a "spongy" appearance.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Transverse Myelitis

Transverse Myelitis Society

Our aim is to offer support and information to all those who may have, or know someone with Transverse Myelitis and its associated conditions such as NMO (Devic's Disease), ADEM and others. We are all unpaid volunteers, and most of us have had TM ourselves.

Location: Midlands
Address: Lullington Village Hall, Lullington, Derby, DE12 8EG
Telephone:
Email: jan.nig@tiscali.co.uk
Website: www.myelitis.org.uk

Traumatic brain injury

Headway

Location: Staffordshire South
Address: Arthur Findlay Centre, 96a Stone Road, Stafford, ST16 2RS
Telephone: 01785 257462
Email: headway@headwaysouthstaffs.com
Website: www.headwaysouthstaffs.com

Traumatic brain injury

Headway

Location: Staffordshire, Lichfield/Tamworth
Address: Sir Robert Peel Hospital in Mile Oak, Tamworth.
Telephone:
Email: Dawn.Perry@southstaffspct.nhs.uk
Website: www.headway.org.uk

Traumatic brain injury

Headway

Location: Staffordshire, North
Address: Headway House_, Elder Road_, Cobridge, Stoke-on-Trent, ST6 2JE
Telephone: 01782 280952
Email:
Website: www.headwaynorthstaffs.org/drupal/contact-us

Tremor

National Tremor Foundation

Misguided beliefs and a lack of awareness mean that many people with this condition never seek medical care though most would benefit from treatment. The National Tremor Foundation dedicates this site to the thousands of people in the UK whose lives are affected by tremor.

Location: Nationwide
Address: Long Term Conditions Centre, The Drive, Gubbins Lane, Harold Wood, ,Essex, RM3 0AR
Telephone: 01708 386399
Email: tremorfoundation@aol.com
Website: www.tremor.org.uk

Trigeminal neuralgia

Trigeminal Neuralgia Association UK

The aim of the Trigeminal Neuralgia Association UK is to offer support and encouragement to TN patients, their families and friends, and to provide information on treatments currently available as well as details of any advances being made in the management of this excruciatingly painful and debilitating condition. Another vital part of our work is to raise awareness amongst medical professionals, particularly GPs and dentists, regarding the diagnosis and treatment.

Location: Nationwide
Address: PO Box 234, Oxted, RH8 8BE
Telephone: 01883 370214
Email: help@tna.org.uk
Website: www.tna.org.uk

Tropical Spastic Paraparesis

National Institute of Neurological Disorders and Stroke

For several decades the term _tropical spastic paraparesis” (TSP) has been used to describe a chronic and progressive disease of the nervous system that affects adults living in equatorial areas of the world and causes progressive weakness, stiff muscles, muscle spasms, sensory disturbance, and sphincter dysfunction.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Troyer Syndrome

National Institute of Neurological Disorders and Stroke

Troyer syndrome is one of more than 40 genetically-distinct neurological disorders known collectively as the hereditary spastic paraplegias.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Trypanosomiasis

West Midlands North Health Protection Unit

Public Health England has been established to protect and improve the nations health and wellbeing and to reduce inequalities. It will lead on the development of a 21st-century health and wellbeing service, supporting local authorities and the NHS to deliver the greatest possible improvements in public health. It came into being in April 2013.

Location: Staffordshire
Address: Stonefield House, St Georges Hospital, Corporation Street, Stafford, ST16 3SR
Telephone: 0844 225 3560
Email: HPAWMN@hpa.org.uk
Website: www.hpa.org.uk

Tuberous Sclerosis

Birmingham, West and East Midlands

The TSA can help you access the accurate and reliable information that you need, as and when you need it. We can also provide a listening ear and help you find your way through the health and social care system. Examples of the ways in which we can help include:

Location: Midlands
Address: PO Box 8001, Derby DE1 0YA
Telephone: 01283 711083
Email: irene.craddy@tuberous-sclerosis.org
Website: www.tuberous-sclerosis.org

Tuberous Sclerosis

Tuberous Sclerosis Association

TSC is a complex genetic condition caused by an alteration in a gene. People with TSC have growths in different organs of the body (brain, heart, eyes, skin, kidneys, lungs) and may have epilepsy, learning disabilities, autism spectrum disorder and kidney problems. Symptoms vary from one person to another with some people showing very few symptoms and others more severely affected.

Location: Nationwide
Address: Toad Hall, White Rose Lane, Woking, Surrey GU22 7LB
Telephone:
Email:
Website: www.tuberous-sclerosis.org

Vascular Erectile Tumor

National Institute of Neurological Disorders and Stroke

A cerebral cavernous malformation (CCM) is a collection of small blood vessels (capillaries) in the central nervous system (CNS) that is enlarged and irregular in structure._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Vasculitis Syndromes of the Central and Peripheral Nervous Systems

National Institute of Neurological Disorders and Stroke

Vasculitis is an inflammation of blood vessels, which includes the veins, arteries, and capillaries._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Von Economos Disease

National Institute of Neurological Disorders and Stroke

Encephalitis lethargica is a disease characterized by high fever, headache, double vision, delayed physical and mental response, and lethargy.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Von Hippel-Lindau Disease

Von Hippel-Lindau syndrome is an inherited disorder characterized by the formation of tumors and fluid-filled sacs (cysts) in many different parts of the body. UK support group for people, and their families, with Von Hippel-Lindau (VHL) syndrome, Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC / Reed's syndrome) and Birt-Hogg-Dube (BHD) syndrome.

Location: National
Address:
Telephone:
Email:
Website: www.vhl.org.uk

Von Recklinghausen’s Disease

National Institute of Neurological Disorders and Stroke

The neurofibromatoses are genetic disorders that cause tumors to grow in the nervous system. _

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Wallenberg’s Syndrome

National Institute of Neurological Disorders and Stroke

Wallenbergs syndrome is a neurological condition caused by a stroke in the vertebral or posterior inferior cerebellar artery of the brain stem._

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Werdnig Hoffman disease

Patient.co.uk

Patient.co.uk is one of the most trusted medical resources in the UK, supplying evidence based information on a wide range of medical and health topics to patients and health professionals.

Location: National
Address:
Telephone:
Email:
Website: www.patient.co.uk

Werdnig-Hoffman Disease

National Institute of Neurological Disorders and Stroke

Spinal Muscular Atrophy (SMA) Types I, II, and III belong to a group of hereditary diseases that cause weakness and wasting of the voluntary muscles in the arms and legs of infants and children.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Wernicke-Korsakoff Syndrome

National Institute of Neurological Disorders and Stroke

Wernicke's encephalopathy is a degenerative brain disorder caused by the lack of thiamine (vitamin B1).

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

West syndrome

West syndrome support group

The group aims to provide support and information about this debilitating condition and its consequences for the child. Currently there is very little information available on the subject so we welcome any contributions to our knowledge.

Location: National
Address:
Telephone:
Email:
Website: www.wssg.org.uk

Whipple’s Disease

National Institute of Neurological Disorders and Stroke

Whipple's disease is a multi-system infectious bacterial disease that interferes with the body's ability to metabolize fats.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Williams Syndrome

The Williams Syndrome Foundation (UK)

We aim to be the first point of contact for individuals with Williams Syndrome, their families and professionals needing support and information regarding the Syndrome.

Location: National
Address: 161 High Street, High Street, Tonbridge, TN9 1BX
Telephone: 01732 365152
Email: enquiries@williams-syndrome.org.uk
Website: www.williams-syndrome.org.uk

Wilson’s Disease

Wilson's Disease Support Group

The Wilson's Disease Support Group UK is an all volunteer organisation which strives to promote the well-being of patients with Wilson's Disease and their families and friends.

Location: National
Address: 36 Audley Drive, Lenten Abbey, Beeston, Nottingham NG9 2SF
Telephone:
Email: linda@wilsonsdisease.org.uk
Website: www.wilsonsdisease.org.uk

Wolmans Disease

National Institute of Neurological Disorders and Stroke

Acid lipase disease occurs when the enzyme needed to break down certain fats that are normally digested by the body is lacking or missing, resulting in the toxic buildup of these fats in the bodys cells and tissues.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

X-Linked Spinal and Bulbar Muscular Atrophy

National Institute of Neurological Disorders and Stroke

Kennedy's disease is an inherited motor neuron disease that affects males.

Location: International
Address: NIH Neurological Institute, P.O. Box 5801, Bethesda, MD 20824
Telephone: 13014965751
Email:
Website: http://www.ninds.nih.gov

Zellweger Syndrome

British Trust for the Myelin Project

The Myelin Project is an international, non-profit partnership of leading neurologists, researchers and informed lay-people. The Myelin Project's purpose is to find therapies for demyelinating diseases, both acquired (such as Multiple Sclerosis) and hereditary neurodegenerative disorders (the Leukodystrophies).

Location: National
Address: 139 Hulme Hall Road, Cheadle Hulme, Stockport, SK8 6LQ
Telephone: 0161 292 3191
Email:
Website: www.myelinproject.co.uk