This section provides information about our members. These organisations aim to inform and advise patients, carers and other people affected by a neurological condition.
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The Batten Disease Family Association is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as batten disease. They work with children, young people, families and professionals across the UK.
BASIC was established in 1986 and provides over 30 services under one roof for those recovering from acquired brain injury. BASIC takes over when people have been discharged from hospital and are faced with the challenges of recovery from a head injury, brain haemorrhage, brain tumour, stroke or similar.
There are hundreds of neurological conditions and Brain Research UK funds the best research at centres of excellence throughout the UK to discover the causes, develop new treatments, and improve the lives of those affected. The charity helps to accelerate the progress of brain research by encouraging scientists to share knowledge and by nurturing future talent.
The British Polio Fellowship is a charitable organisation dedicated to supporting and empowering the 120,000 people in the UK living with the late effects of polio and post-polio syndrome (PPS). It provides information, welfare and support to those affected, to enable them to live full, independent and integrated lives and campaigns to raise awareness of PPS.
CMT work to support those who are affected by Charcot-Marie-Tooth Disease, also known as Hereditary Motor and Sensory Neuropathy or Peroneal Muscular Atrophy. They offer assistance and support to those with this condition. They promote and research into the means by which CMT may be prevented and treated and to disseminate the results of such research for the benefit of the public.
Set up in 2004, The Daisy Garland is a family-run, national, UK registered charity, which offers help and support to those whose lives are touched by drug resistant epilepsy. The Daisy Garland funds an increasing number of Ketogenic Dietitians in NHS hospitals across the UK and provide help with support equipment for use at home.
Run by stroke survivors for stroke survivors, Different Strokes aims, through active self help and mutual support, to help younger stroke survivors to optimise their recovery, take control of their lives and regain as much independence as possible. They also organise exercise classes nation-wide.
Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research by: supporting families affected by Dravet Syndrome emotionally, practically and financially, raising awareness and understanding of Dravet Syndrome among medical professionals and funding medical research to increase understanding of Dravet Syndrome, improve its management, and work towards better outcomes.
“Dystonia UK is the only UK national charity dedicated to helping people living with dystonia, a neurological movement disorder thought to affect around 100,000 people in the UK. They provide support for people with dystonia and their families through the publication of information and updates, influencing national policies and best practice, supporting research and development, and raising awareness of the little-known condition.”
Epilepsy Research UK supports and promotes basic and clinical scientific research into the causes, treatments and prevention of epilepsy. We are the only national charity in the UK that is exclusively dedicated to funding independent research into this condition. Epilepsy Research UK was formed following the merger of the Epilepsy Research Foundation and the Fund for Epilepsy, in April 2007.
Familial Dysautonomia UK (FDUK) supports sufferers of FD and their families. Formally known as the Dysautonomia Society of Great Britain (DSGB) the charity strives to raise awareness of the condition in the community. Its aim is also to raise money to fund individual medical needs and requirements, as well as pay for specialised doctors to cone to London to hold clinics to assess the FD sufferers as well as guide UK doctors in the specialised expertise.
FND Action is a registered charity in England and Wales, which aims to raise awareness of functional neurological disorder (FND) and Non Epileptic Attack Disorder (NEAD), and provide a support network across the UK for those diagnosed and their families and carers.
FND Hope UK promotes awareness of FND through education and raising public understanding in England and Wales. We are dedicated to supporting those individuals affected with functional symptoms by advancing research into practical applications for the prevention, treatment and recovery of FND. We are uniting patients and their families from the UK with leading researchers and advocates to pioneer a new standard of care for FND throughout the world.
GAIN offers support and information to those affected by Guillain-Barré syndrome, CIDP and other dysimmune neuropathies throughout Britain and Ireland.
A registered national charity, founded in 1971, which exists to help people living with Huntington’s disease to live a better life. The charity improves care and support services for people with Huntington’s disease, educates families and professionals and champions people’s rights.
Matthew’s Friends provide quality information, training, research, recipes and support for patients, families and health care professionals, since 2004. Medical Ketogenic Dietary Therapies are used for the treatment of drug-resistant epilepsy, Glut1 Deficiency Syndrome and PDHD, with further neurological disorders being explored.
The Motor Neurone Disease Association works to ensure that people affected by motor neurone disease secure the highest standards of care in order to achieve quality of life. They stimulate and fund research into the causes of motor neurone disease. They provide a helpline, information, equipment loan, financial support, a network of regional care advisers, local branch and volunteer visitors.
The Multiple Sclerosis Society provide support and information for people affected by multiple sclerosis through a network of branches and through helpline and publications. They carry out research into multiple sclerosis and policy work and campaigns on multiple sclerosis issues. They also provides respite and holiday homes.
The Multiple Sclerosis Trust is a leading UK charity for people with multiple sclerosis, their families and friends, and for the health and social care professionals who work with them. They provide Information about multiple sclerosis; education for nurses and other professionals; carry our research which is relevant to people who live with multiple sclerosis; and they support for multiple sclerosis specialist nurses.
The Multiple System Atrophy Trust provides information and support to people living with multiple system atrophy and their families; raises awareness of the condition and its treatment, especially among healthcare professionals; and promotes and sponsors research into multiple system atrophy, its cause, treatment and ultimately its cure.
The Myaware offers support to myasthenics and their families, increasing public and medical awareness and raising funds for research. They act as a contact point putting sufferers and their families in touch with each other so that they do not feel isolated in dealing with this rare disease. They also put members in touch with other appropriate agencies for any specific problems they are facing, for example problems with benefits.
Supporting people with narcolepsy, their families, carers and others interested in improving their quality of life. They provide information about narcolepsy for education and health professionals and campaign for access to medication and benefits to support those living with this rare neurological condition.
The National Tremor Foundation provides patients and their families with information on essential tremor. They maintain a world-wide referral network of specialists experienced in the clinical care of essential tremor patients. They assist in the formation of local independent support groups for patients.
Overcoming MS (OMS) is the world’s leading multiple sclerosis healthy lifestyle charity. They are unique in their whole-person approach and practical evidence-based focus upon self-management of MS formulated as a holistic 7-step program. They are registered to work in the UK (England, Wales and Scotland), the US and Australia.
The Polio Survivors Network is a post-polio information service run by polio survivors for medical professionals and polio survivors, their families and friends. Their extensive website contains an online library of 100+ catalogued medical articles and other information.
The PSP Association promotes research worldwide into the cause, an effective treatment and eventual cure for progressive supranuclear alsy. They provide information and support to afflicted families across Europe. They raise awareness of the disease, particularly amongst relevant health professionals and amongst the general public at large, mainly in the UK.