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.
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.
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.
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Ataxia
Action for ataxia telangiectasia
Friedreich’s Ataxia Research Association
Bell’s palsy
Blindness
British Retinitis Pigmentosa Society
Royal National Institute for the Blind (RNIB)
Royal Society for Blind Children
Brain injury
Brain Injury Rehabilitation Trust
Brain Injury Research Institute (BIRI)
UK Acquired Brain Injury Forum
Brain tumours
Defeat glioblastoma multiforme
HeadSmart (for childhood brain tumours)
Chiari malformation
Chiari and Syringomyelia Foundation (CSF)
Deafness
National Deaf Children’s Society
Royal Association for Deaf People
Dementia
Association for Frontotemporal Dementia (FTD)
Disability
Down’s Syndrome Research Foundation
Dystonia
Dystonia Medical Research Foundation
Foundation for Dystonia Research
Encephalitis
Anti-NMDA Receptor Encephalitis Foundation
Autoimmune Encephalitis Alliance
Eden Dora Trust for Children with Encephalitis
International Autoimmune Encephalitis Society (IAES)
Encephalopathy
American Liver Foundation (hepatic)
Hope for HIE (hypoxic ishaemic)
Epilepsy
FABLE (For a Better Life with Epilepsy)
Joint Epilepsy Council of the UK and Ireland
Fibromyalgia
National Fibromyalgia and Chronic Pain Association
National Fibromyalgia Association
Functional neurological disorders
Genetic disorders
Huntington’s disease
Huntington’s Disease Association
Huntington’s Disease Association Northern Ireland
Huntington’s Disease Foundation
Headache
The National Headache Foundation
Hereditary neuropathy
Hereditary Neuropathy Foundation
Hereditary spastic paraplegia
Inflammatory neuropathy
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)
Meningitis
Meningitis Help Charitable Trust
Meningitis Research Foundation
Metabolic disorders
Association for Glycogen Storage Disease (AGSD) UK
Batten Disease Family Association
Metabolic Support UK (formerly CLIMB)
Wilson’s Disease Support Group
Mitochondrial disorders
Australian Mitochondrial Disease Foundation
Children’s Mitochondrial Disease Network (CMDN)
Rare Mitochondrial Disorders Service
United Mitochondrial Disease Foundation (UMDF)
Wellcome Centre for Mitochondrial Research
Motor neurone disease
Multiple sclerosis
Multiple Sclerosis Association of America
Muscular dystrophy
FSHD Muscular Dystrophy Support Group
Spinal Muscular Atrophy Support (UK)
Myalgic encephalomyelitis
Myopathy
Centronucclear and Myotubular Myopathy Information Point
The Myositis Association (TMA)
Myasthenia gravis
Myasthenia Gravis Foundation of America
MYAWARE (Myasthenia Gravis Association)
Neuroinflammation
General neurology
Pain
Trigeminal Neuralgia Association (TNA) UK
Parkinsonism
Phakomatoses
The Neuro Foundation (Neurofibromatosis)
Tuberous Sclerosis Association
Peripheral neuropathy
Foundation for peripheral neuropathy
Post-polio syndrome
Prion diseases
Rare diseases
Restless legs syndrome
Sleep disorders
Spinal cord injury
Brain and Spinal Injury Centre (BASIC)
Christoper and Dana Reeve Foundation
Stroke
The ARNI Institute Different Strokes
Tremor
Vascular malformations
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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:
The Neurology Lounge 