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.
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.
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 UK Action for ataxia telangiectasia Ataxia Telangiectasia Society Friedreich's Ataxia Research Association Spinocerebellar ataxia (SCA)
British Retinitis Pigmentosa Society Royal National Institute for the Blind (RNIB) Royal Society for Blind Children
Brain Injury Matters Brain Injury Rehabilitation Trust Brain Injury Research Institute (BIRI) Child Brain Injury Trust Headway UK Acquired Brain Injury Forum
Brain Trust Brain Tumour Action Brain Tumour Charity Defeat glioblastoma multiforme HeadSmart (for childhood brain tumours) Meningioma UK National Cancer Institute Pituitary Foundation
Action on Hearing Loss British Deaf Association Hearing Link National Deaf Children's Society Royal Association for Deaf People
Alzheimer's Society UK Association for Frontotemporal Dementia (FTD) Dementia Society Dementia UK Rare Dementia Support
ADHD Families Autistica CONTACT David Lewis Centre Down's Syndrome Association Down's Syndrome Research Foundation MENCAP SCOPE
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
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 IIH UK Migraine Action Migraine Canada Migraine Trust The National Headache Foundation National Migraine Centre OUCH UK
HEREDITARY SPASTIC PARAPLEGIA
ALD Life (adrenoleukodystrophy) Australian leukodystrophy Foundation The Global Leukodystrophy Initiative MLD Support Association UK (metachromatic leukodystrophy) World Leukodystrophy Alliance
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
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)
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
Behçet's Syndrome Society NMO Spectrum UK Transverse Myelitis Society UK Sarcoidosis Charity Vasculitis UK
Cure Parkinson's Trust Defeat MSA LBD Association Lewy Body Society Michael J Fox Foundation MSA Trust Parkinson's UK PSP Association
Amyloidosis Foundation Erb’s Palsy Group Foundation for peripheral neuropathy Neuropathy Support Network
RESTLESS LEGS SYNDROME
SPINAL CORD INJURY
Brain and Spinal Injury Centre (BASIC) Christoper and Dana Reeve Foundation Spinal Injuries Association
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!
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