200 inspiring neurology patient support groups

Neurology is a jungle, and for the unwary, a minefield. It has one of the most diverse and complex diseases of all the medical specialties. Neurological patients are often left feeling bewildered by the processes and procedures they undergo – from bizarre examination rituals to complicated treatment regimes. The patient’s pathway often resembles an endless maze, with no exit in sight. The diagnosis, if and when it is eventually made, often has an eponymous or acronymous name that the patient cannot pronounce.

By Niki Odolphie from Frome, England – Longleat Maze, CC BY 2.0, Link

The neurologist often breaks the news of the diagnosis in a hot clinic that has overrun its allotted time, or on a busy ward round that has elbowed itself into lunch time. With only a few minutes to spare, the hungry and harassed neurologist manages to sketch out the bare bones of the disease, and paints an even sketchier picture of what it portends for the future. Patients at this point are at their wits ends, their whole world threatened by a menacing disease they little understand. Any questions or queries seeking clarification almost pushes the neurologist’s fragile patience and time to the precipice…and the answers often do little to comfort the distraught patient. Adrift and rudderless, the vulnerable patient is left to navigate a bleak course through uncharted waters towards an obscure future.

By Frank Bramley – Tate Gallery, online database: http://www.tate.org.uk/art/artworks/bramley-a-hopeless-dawn-n01627, Public Domain, Link

Thankfully for the new patient, there are countless associations and organisations out there eager to guide them through the fog and mist of heir new reality. With reassuring hands and broad shoulders, these groups provide invaluable help in threatening times. They facilitate patient care in a hydra-headed specialty of complex disorders, and thereby making the task of the neurologist infinitely easier. To celebrate these beacons of hope, we have scoured the terrain and discovered these 200 inspiring neurology patient support groups.





Ataxia UK

Action for ataxia telangiectasia

Ataxia Telangiectasia Society

Friedreich’s Ataxia Research Association


Bell’s palsy

Bell’s Palsy Association

Facial Palsy UK



British Retinitis Pigmentosa Society

Royal National Institute for the Blind (RNIB)

Royal Society for Blind Children


Brain injury

Brain Injury Matters

Brain Injury Rehabilitation Trust

Brain Injury Research Institute (BIRI)

Child Brain Injury Trust


UK Acquired Brain Injury Forum


Brain tumours

Brain Trust

Brain Tumour Action

Brain Tumour Charity

Defeat glioblastoma multiforme

HeadSmart (for childhood brain tumours)

Meningioma UK

National Cancer Institute

Pituitary Foundation


Chiari malformation

Ann Conroy Trust

Chiari and Syringomyelia Foundation (CSF)

Chiari Fund

Chiari Medicine



Action on Hearing Loss

British Deaf Association

Hearing Link

National Deaf Children’s Society

Royal Association for Deaf People

Helping hand. Judit Klein on Flickr. https://www.flickr.com/photos/juditk/5655247429


Alzheimer’s Society UK

Association for Frontotemporal Dementia (FTD)

Dementia Society

Dementia UK

Rare Dementia Support



ADHD Families



David Lewis Centre

Down’s Syndrome Association

Down’s Syndrome Research Foundation 





Dystonia Medical Research Foundation

Dystonia Network of Australia

Dystonia Society

Foundation for Dystonia Research



Anti-NMDA Receptor Encephalitis Foundation

Autoimmune Encephalitis Alliance

Eden Dora Trust for Children with Encephalitis

Encephalitis Global

Encephalitis Society

International Autoimmune Encephalitis Society (IAES)



Alcopath (alcohol related)

American Liver Foundation (hepatic)

British Liver Trust (hepatic)

HESA (Hashimoto)

Hope for HIE (hypoxic ishaemic)



Dravet Syndrome UK

Epilepsy Action

Epilepsy Connections

Epilepsy Foundation

Epilepsy Network

Epilepsy Research UK

Epilepsy Scotland

Epilepsy Society

Epilepsy Wales

FABLE (For a Better Life with Epilepsy)

Joint Epilepsy Council of the UK and Ireland

LGS Foundation

Reverse Rett

SUDEP Action

Young Epilepsy



Fibromyalgia Action UK

Fibromyalgia Trust

National Fibromyalgia and Chronic Pain Association

National Fibromyalgia Association


Functional neurological disorders

FND Action

FND Hope


Shaking Hands. Nicola Barnett on Flickr. https://www.flickr.com/photos/n_corboy/4921290518

Genetic disorders

Genetic Alliance

Genetic Disorders UK

Chromosome 18 Europe


Huntington’s disease

Huntington’s Disease Association

Huntington’s Disease Association Northern Ireland

Huntington’s Disease Foundation



American Migraine Foundation

Cluster Headache Awareness

Headache Australia

I Have IIH Foundation


Migraine Action

Migraine Canada

Migraine Trust

The National Headache Foundation

National Migraine Centre



Hereditary neuropathy

Hereditary Neuropathy Foundation




Hereditary spastic paraplegia

HSP Research Foundation

HSP Support Group UK


Inflammatory neuropathy


GBS/CIDP Foundation International

Guillain Barre Syndrome Foundation Canada



ALD Life (adrenoleukodystrophy)

Australian leukodystrophy Foundation

The Global Leukodystrophy Initiative

MLD Support Association UK (metachromatic leukodystrophy)

World Leukodystrophy Alliance

45/365 A Helping Hand. Christian Bernal on Flikr. https://www.flickr.com/photos/townhero/5557220801


Meningitis Now

Meningitis Help Charitable Trust

Meningitis Research Foundation


Metabolic disorders

Association for Glycogen Storage Disease (AGSD) UK

Batten Disease Family Association

Gaucher’s Association

Metabolic Support UK (formerly CLIMB)

Neimann-Pick UK

Wilson’s Disease Support Group


Mitochondrial disorders

Australian Mitochondrial Disease Foundation

Children’s Mitochondrial Disease Network (CMDN)

LHON Society

The Lily Foundation

Rare Mitochondrial Disorders Service

United Mitochondrial Disease Foundation (UMDF)

Wellcome Centre for Mitochondrial Research


Motor neurone disease

ALS Association

Cure MND

Fight MND

MND Association

MND Australia


Multiple sclerosis

Multiple Sclerosis Society

Multiple Sclerosis Trust

Multiple Sclerosis Association of America


Muscular dystrophy

Action Duchenne

Duchenne Family Support Group

FSHD Muscular Dystrophy Support Group

Muscular Dystrophy UK

Myotonic Dystrophy Foundation

Spinal Muscular Atrophy Support (UK)

Treat NMD Network


Myalgic encephalomyelitis

Action for ME

ME Association

Week 22 hand. the_green_squirrel on Flickr. https://www.flickr.com/photos/the_green_squirrel/27296523686/


Centronucclear and Myotubular Myopathy Information Point

Myositis UK

The Myositis Association (TMA)


Myasthenia gravis

Myasthenia Gravis Foundation of America

MYAWARE (Myasthenia Gravis Association)



Behçet’s Syndrome Society

NMO Spectrum UK

Transverse Myelitis Society

UK Sarcoidosis Charity

Vasculitis UK


General neurology

The Brain Charity

The Brain Foundation

The Neurological Alliance

Neurology on Wheels



Away With Pain


Pain Concern

Pain UK

Trigeminal Neuralgia Association (TNA) UK



Cure Parkinson’s Trust

Defeat MSA

LBD Association

Lewy Body Society

Michael J Fox Foundation

MSA Trust Parkinson’s UK

PSP Association



The Neuro Foundation (Neurofibromatosis)

Sturge Weber Foundation UK

Tuberous Sclerosis Association

Helping Hands against blue sky. Cabellmon on Flickr. https://www.flickr.com/photos/bellmon/26863931354

Peripheral neuropathy

Amyloidosis Foundation

Erb’s Palsy Group

Foundation for peripheral neuropathy

Neuropathy Support Network


Post-polio syndrome

British Polio Fellowship

Polio Survivors Network


Prion diseases

CJD Support

Prion Alliance


Rare diseases

Rare Disease UK



Restless legs syndrome

RLS Foundation



Sleep disorders

British Sleep Society

Narcolepsy UK

The Sleep Council


Spinal cord injury

Brain and Spinal Injury Centre (BASIC)

Christoper and Dana Reeve Foundation

Spinal Injuries Association



The ARNI Institute Different Strokes

National Stroke Association

Stroke Association

Mother and Infant bond. Steve Corey on Flickr. https://www.flickr.com/photos/the_green_squirrel/27296523686/


National Tremor Foundation


Vascular malformations

AVM Support UK

Brain Aneurysm Foundation

Cavernoma Alliance UK


This is the ultimate list, but no list is ever complete or, for that matter, perfect. Therefore please leave a comment if you think a deserving group has been overlooked! And don’t forget, you can bookmark this list on Neurochecklists:

‘Helping Hands’, by Alec Peever (2011). Snapshooter 46 on Flickr. https://www.flickr.com/photos/calotype46/7188806225

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