200 dependable and reliable neurology patient support groups

Neurology is a jungle, and for the unwary, a minefield. It perhaps has the most diverse number of complex diseases of all the medical specialties. Patients are often bewildered by neurological processes and procedures, ranging from the probing questions to the bizarre examination ritual. They are dumbfounded by the variety of intricate tests required to assess just one symptom. 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 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 strain the neurologist’s paper-thin patience to breaking point…and adds very little additional useful information. The vulnerable patient, adrift and rudderless, is left to chart the course to what appears a bleak and hopeless future.

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

Luckily there are many associations and organisations out there guiding and signposting neurology patients to support and information. These groups facilitate patient care in a hydra-headed specialty of complex disorders, and make the task of the neurologist infinitely easier. To celebrate these beacons of hope, we have scoured the terrain for the most reliable support groups, and have come up with our ultimate list of the most dependable neurology patient support and resource groups. Many are in the UK, for obvious reasons, but there are many other international bodies sprinkled throughout the list. Enough of the introduction however, and on to the list!

***

ATAXIA

Ataxia UK

Action for ataxia telangiectasia

Ataxia Telangiectasia Society

Friedreich's Ataxia Research Association

Spinocerebellar ataxia (SCA) 

BELL’S PALSY

Bell's Palsy Association

Facial Palsy UK

BLINDNESS

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

Headway

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

DEAFNESS

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

DEMENTIA

Alzheimer's Society UK

Association for Frontotemporal Dementia (FTD)

Dementia Society

Dementia UK

Rare Dementia Support

DISABILITY

ADHD Families

Autistica

CONTACT

David Lewis Centre

Down's Syndrome Association

Down's Syndrome Research Foundation 

MENCAP

SCOPE

DYSTONIA

Dystonia Medical Research Foundation

Dystonia Network of Australia

Dystonia Society

Foundation for Dystonia Research

ENCEPHALITIS

Anti-NMDA Receptor Encephalitis Foundation

Autoimmune Encephalitis Alliance

Eden Dora Trust for Children with Encephalitis

Encephalitis Global

Encephalitis Society

International Autoimmune Encephalitis Society (IAES)

ENCEPHALOPATHY

Alcopath (alcohol related)

American Liver Foundation (hepatic)

British Liver Trust (hepatic)

HESA (Hashimoto)

Hope for HIE (hypoxic ishaemic)


EPILEPSY

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

Fibromyalgia Action UK

Fibromyalgia Trust

National Fibromyalgia and Chronic Pain Association

National Fibromyalgia Association

FUNCTIONAL NEUROLOGICAL DISORDERS

FND Action

FND Hope

Neurosymptoms.org

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

HEADACHES

American Migraine Foundation

Cluster Headache Awareness

Headache Australia

I Have IIH Foundation

IIH UK

Migraine Action

Migraine Canada

Migraine Trust

The National Headache Foundation

National Migraine Centre

OUCH UK

HEREDITARY NEUROPATHY

Hereditary Neuropathy Foundation

CMT UK

CMT USA

HEREDITARY SPASTIC PARAPLEGIA 

HSP Research Foundation

HSP Support Group UK

INFLAMMATORY NEUROPATHIES

GAIN

GBS/CIDP Foundation International

Guillain Barre Syndrome Foundation Canada

LEUKODYSTROPHIES

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

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 (MND)

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/

MYOPATHY

Centronucclear and Myotubular Myopathy Information Point

Myositis UK

The Myositis Association (TMA)

MYASTHENIA GRAVIS

Myasthenia Gravis Foundation of America

MYAWARE (Myasthenia Gravis Association)

NEUROINFLAMMATORY DISORDERS

Behçet's Syndrome Society

NMO Spectrum UK

Transverse Myelitis Society

UK Sarcoidosis Charity

Vasculitis UK

NEUROLOGY

The Brain Charity

The Brain Foundation

The Neurological Alliance

PAIN

Away With Pain

CRPS UK

Pain Concern

Pain UK

Trigeminal Neuralgia Association (TNA) UK

PARKINSONISM

Cure Parkinson's Trust

Defeat MSA

LBD Association

Lewy Body Society

Michael J Fox Foundation

MSA Trust

Parkinson's UK

PSP Association

PHAKOMATOSES

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

SWAN UK

RESTLESS LEGS SYNDROME

RLS Foundation

RLS-UK

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

STROKE

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/

TREMOR

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, of if a listed group is undeserving!

 

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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