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Shape of Training: response received from Chair of UK Shape of Training Steering Group.

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ABN Annual Meeting 3-5 May 2017- Registration deadline: 17th April 2017

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Patients and Carers

The Association of British Neurologists exists to advance the knowledge and practice of Neurology throughout the British Isles.  We cannot therefore put patients or carers in touch with a neurologist.  If you are a patient in need of medical assistance, please contact your GP in the first instance. Information about local neuroscience centres may be found here.    If you would like to speak to a nurse, The Brain and Spine Foundation offer a free, confidential helpline.  Please call 0808 808 1000 or visit here for further information.  If none of our suggestions can assist you, please contact us for further information.

Please see below for an alphabetical list of organisations that may be of use to you. 

Acoustic Neuroma

British Acoustic Neuroma Association is   a patient organised and administered   information and mutual aid group, which   exists for mutual support,   information exchange and mutual listening. Web: 

Alzheimer's disease

The Alzheimer's Society is   the UK's leading care and   research charity for people with any   form of dementia and their   carers. Web:


Ataxia UK   helps   people affected by ataxia with research, information,   contacts, a   helpline, and grants to members in need. Web:

Ataxia telangiectasia

The A-T   Society is working to   improve the quality of life for   children and adults with   Ataxia-Telangiectasia ("A-T") and   their families   through research, support and awareness. Web:

Brain & spinal injuries

Since 1986 the Brain   and Spinal Injury   Charity has been raising funding for   research into the   brain  and more recently they have extended their     services to include support and information for those     recovering from these conditions. Web:

Brain and Spine Foundation

The Brain and Spine Foundation was set up in   1992 to   develop research, education and information   programmes aimed at   improving the prevention, treatment   and care of people affected by   disorders of the brain and spine   and to stimulate the greater allocation of   resources across all   neurological disorders.Web:

Brain injury

The UKABIF   is a not-for-profit   coalition of organisations and individuals that   seeks to promote understanding   of all aspects of acquired brain   injury and to provide   information and expert input to policy makers   and others to   promote the interests of brain injured people and their   families.   Web:

British Association for the Study of Headache

'To relieve those affected by the burdens of   headache' Web:

Cavernoma Alliance

Cavernoma Alliance UK is   a charity created by people affected   by Cavernoma otherwise known as cerebral   cavernous malformations or   cavernous angioma.  Our mission is to improve   the quality of life   for those affected by cavernomas through education,   support and   promotion of research. Web:


Cerebral palsy

Scope   is   a disability organisation in England and Wales whose focus is   people   with cerebral palsy. Web:


Charcot-Marie-Tooth UK   works to support those who are   affected by Charcot-Marie-Tooth   Disease, also known as Hereditary   Motor and Sensory Neuropathy or   Peroneal Muscular Atrophy Web:

Child brain Injuries

Child Brain Injury Trust   aims to improve the quality of life   for all children and young who   have an acquired brain injury and   to enable them to achieve their full   potential. Web:

Cluster Headache

Ouch (UK)     provides support for sufferers of cluster headaches and their   families,   and to increase public awareness of the condition. Web:


The mission of for   dementia is to   improve the quality of life for people   affected by dementia. Web:


Speakability   is   the national charity that supports people living with aphasia   and   their carers through its information service, national     network of groups and activities programme; influences     individuals, organisations and statutory bodies in order to     improve services for people living with aphasia; and raises funds     to support these aims. Web:


The dystonia   society is a medical   charity, established in 1983,   working for the benefit of all   who suffer from dystonia and those who   care for them. Web:


The Encephalitis   Society provides   information and support to improve the   quality of life of all people   affected directly and indirectly by   encephalitis. Web: 


The National   Society for Epilepsy is   striving for a world without   epilepsy. In the meantime   we will seek to enhance the Quality of Life of     people affected by epilepsy by promoting research, education and     public awareness, and by providing specialist medical care and   support   services. Web:


Epilepsy Action     provides information about coping with epilepsy and seizures   including   help and advice through the use of email and   Freephone telephone   helplines. Web:

Guillain-Barré Syndrome

The GBS   Support Group provide   information and support to those   suffering from   Guillain-Barré syndrome and related neuropathies   including   CIDP and Miller Fisher syndrome. Web:

Head injury

Head Injury Re-Education is   an organisation dedicated to   helping children, young people   and adults who have acquired brain   injury and whose lives has been   affected as a result. Web:

Head injury

The aim of Headway   is to promote   understanding of all aspects of brain injury; and to   provide   information, support and services to people with a brain     injury, their family and carers. Web:


Hemihelp     aims to offer information and support to families where there is   a child   with hemiplegia and raise awareness about the   condition amongst   both the professionals who work with   our children and the public. Web:

Huntington's disease

The Huntington's   Disease Association   exists to support people affected by   the disease and   to provide information and advice to   professionals whose   task it is to support Huntington's disease families.   Web:

KLS Support UK

 KLS Support UK is a small charity which was   set up to   provide support to families affected  by Kleine-Levin   Syndrome (KLS),    raise awareness of this rare neurological   disorder and support   research.

Lincolnshire Post Polio Network

The Lincolnshire Post-Polio Web Site began life   in 1997 and over   the years has expanded to become a major resource of   polio and post-polio   information. The site currently comprises over   450 documents, many of which   are substantial articles in their own   right. A project to restructure the web   site is ongoing. The project   covers improving accessibility and navigation,   updating content as   well as the provision of new facilities. The current   production web   site will continue to be available for the duration of this     project.


Meningitis Now produces     information to raise awareness of the disease, funds research into   vaccines   and treatment, and offers a wide range of support for people   affected by   meningitis and meningococcal septicaemia. Web: 


The Migraine   Action Association (formerly the   British Migraine   Association) aims to bridge the gap between the   migraine sufferer and   the medical world by providing information   on all aspects of the   condition and its management. Web:


The Migraine   Trust is committed to   supporting sufferers and their   families by funding and   promoting research, improving diagnosis and   treatment,   providing information and advice, and raising awareness     of migraine as a significant public health problem. Web:

Motor neurone disease

Scottish Motor Neurone Disease   Assoication is the only charity exclusively providing   support for   people affected by MND in Scotland. Web:

Motor neurone disease

The Motor   Neurone Disease Assoication   is the only national   organisation in England, Wales and   Northern Ireland dedicated to the   support of people with MND and   those who care for them. Web:

Multiple sclerosis

The MS   Society is the main source   of reliable information about   MS and the leading UK funder   of MS research while also providing a   strong voice on issues   related to MS. Its nation-wide network of   branches provides   information and support to everyone affected by MS.   Web:

Multiple sclerosis

The Multiple   Sclerosis Society Scotland is   Scotland's largest charity   for people affected by multiple   sclerosis. They are part of the MS   Society of Great Britain and   Northern Ireland. Web:

Multiple sclerosis

The MS   Trust is a charity for   people with multiple sclerosis,   their families and   friends, and for all health professionals who work   with   them.  Information offered about MS, education for     nurses and other health professionals and fund applied research. Web:

Multiple system atrophy

The Multiple System Atrophy Trust is   the   recognised United Kingdom support and information service     for people with Multiple System Atrophy (MSA),   their families and   carers. Web:

Muscular dystrophy

The Muscular   Dystrophy Campaign is   the only UK charity focusing on all   muscular dystrophies and allied   disorders. Web:      Further Information onFree     Publications

Myasthenia gravis

The Myasthenia   Gravis Association (MGA)   has as its objective the promotion   of the welfare of sufferers from   Mysathenia Gravis in the United Kingdom and   the Republic of Ireland.


Narcolepsy Association UK (UKAN) is   an association of narcoleptics,   their relatives and others for the   benefit, relief and aid of   persons suffering from narcolepsy. Web:

National Creutzfeldt-Jakob Disease Surveillance   Un

The incidence of Creutzfeldt-Jakob disease   (CJD) is   monitored in the UK by the CJD     Surveillance Unit based at the Western General Hospital     in Edinburgh, Scotland. The unit brings together a team of clinical     neurologists, neuropathologists and scientists specialising in   the   investigation of this disease. Web:


The Neurofibromatosis   Association aims to   fight neurofibromatosis by acting as   a mutual support group,   linking those affected to each other and   with the medical   profession, providing information, and raising funds to   support   research. Web:

Neurological Alliance

The Neurological Alliance is a collaborative   forum of a wide   range of neurological charities. By working together   members of the Alliance   pursue the highest standards of service and   care for the estimated three   million people in the UK affected by a   neurological condition, their families   and carers.  Web:


Neuromyelitis Optica

NMO Spectrum-UK was established in 2014 to   support people with Neuromyelitis Optica (NMO) and their families and carers.   It provides a forum for sharing experiences and mutual support. In addition   it seeks to raise awareness, particularly among the medical profession, of   this debilitating condition.  



Pain Concern     offers information and support for pain sufferers, with free   Factsheets   and leaflets to help manage pain, a quarterly   magazine, updates on   the latest developments, and a   listening-ear helpline. Web:

Parkinson's disease

The aim of the Parkinson's   Disease   Society is the conquest of Parkinson's disease   and the   alleviation of the distress it causes through research,     education, welfare and communication. Web:


The British   Polio Fellowship (BPF)   is a registered charity that   provides information and advice   about rights, housing issues,   equipment, self-management courses,   and the late effects   of polio/post polio syndrome. Web:

Prion disease

Prion Clinic at St Mary's provides factsheets   about all forms of   Prion Disease, information about the clinic, and   sources of support. Web:

Progressive Supranuclear Palsy

The PSP   Association was set up in   1994 by a family afflicted   with PSP to provide   information and support to sufferers and their   carers   across Europe, to promote and sponsor research worldwide and     to engender awareness of this disease and the Association, mainly within     the UK. Web:

Rett syndrome

The Rett   Syndrome Association UK is a   national organisation   giving help, advice and support to parents,   carers, siblings and   professionals - in fact anybody - involved   with a child or   adult who has Rett syndrome. Web:

Rockefeller Medical Library

A searchable database of neurological charities,   societies, and   support groups. Although still under construction,   information is actively   being added to the patient support database by   library staff / 


Moving Forward     helps people with spasticity by publishing information that can   lead to   a better understanding of this condition, improved   treatment, and   quality of life. The Association also   supports health professionals that   want to learn more   about the most up-to-date and effective management     techniques and treatment. Web:

Spina bifida & hydrocephalus

ASBAH aims to improve services for people   with spina bifida   and/or hydrocephalus, to work with them to   extend their choices, and   maximise opportunities for independence   and achievement. Web:

Stiff Person Syndrome

Stiff   Person Syndrome aims to aid the protection and preservation of   the health of   persons affected by Stiff Person Syndrome and their   family and carers.  Web:


The Stroke   Association provides   support for people who have had   strokes, their families and   carers. They campaign, educate and inform   to increase knowledge   of stroke at all levels of society. Web:


Different Strokes is   charity set up by younger stroke   survivors for younger stroke survivors.   Web:


CHSS     aims to improve the quality of life for people in Scotland   affected by   chest, heart and stroke illness through medical   research,   advice and information, and support in the community.   Web:

Syringomyelia Research

Ann's Neurological Trust Society   facilitates self help and support   for sufferers and carers   from syringomyelia and related   conditions. Web:


The Lewy Body Society


Tourette syndrome


Transverse Myelitis Society


The   Lewy Body Society is   a registered charity whose purpose is   to fund research into Dementia with   Lewy Bodies (DLB). We also hope to   provide a community focus for those who   suffer from DLB along with   their carers and families. 

Tourettes Action is   a registered charity dedicated to   providing support, educating, informing and   campaigning, and promoting   medical research on behalf of people who are   affected by TS.     Web: 

The   Transverse Myelitis Society exists to support people   living with   Transverse Myelitis and related conditions (Neuromyelitis Optica   and   Acute Disseminated Encephalomyelitis) and their families and carers by     providing information, support and advice, and raising the awareness of the     public and medical professionals of these conditions.


The National   Tremor Foundation aims   to offer a support and advice service   to people of all ages   who have been diagnosed with tremor of all   types. Web:

Tuberous Sclerosis

The Tuberous   Sclerosis Association supports sufferers,   promotes   awareness, and seeks the causes and best possible   management of Tuberous   Sclerosis.  All aspects of the   Association's work are aimed at   improving the quality of life of   those who are affected by Tuberous   Sclerosis. Web:





Shape of Training: response received from Chair of UK Shape of Training Steering Group.

Read More


ABN Annual Meeting 3-5 May 2017- Registration deadline: 17th April 2017

Read More