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

Ataxia UK

Action for ataxia telangiectasia

Ataxia Telangiectasia Society

Friedreich’s Ataxia Research Association

 

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

 

Headache

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 neuropathy

GAIN

GBS/CIDP Foundation International

Guillain Barre Syndrome Foundation Canada

 

Leukodystrophy

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

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)

 

Neuroinflammation

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

 

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! 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

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s