Browse our directory of member organisations to see who we are working with and find support for you. These organisations aim to inform and advise individuals, 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.
Behçet’s UK strives to secure the best care for all those affected by Behçet’s, including those yet to be diagnosed and assists their carers, parents, and relatives. Similarly, they promote research into the cause, effects, treatment and management of Behçet’s. Behçet’s disease/syndrome is a rare, complex, debilitating, lifelong condition with no known cause, which can affect any organ in the body and is only treatable to a degree. Neurological complications are a more concerning aspect of the condition.
The Brain Charity helps people with all forms of neurological condition to lead longer, healthier, happier lives. There are more than 600 conditions affecting the brain, spine and nervous system.
The charity champions neurodiversity and provides practical help, emotional support and social activities for every single one.
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. Read about why they joined the Alliance here
Brain Tumour Research’s vision is to find a cure for brain tumours. Brain Tumour Research is only national charity in the UK that is dedicated to raising funds for continuous and sustainable scientific research into brain tumours and are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.
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.
The Childhood Tumour Trust works to support children, young people and their families affected by Neurofibromatosis Type 1 and to raise awareness amongst medical professionals.
The CSF Leak Association is a registered charity in the UK, working to raise awareness of cerebrospinal fluid (CSF) leaks and to provide support to patients, their families and medical professionals. They strive to improve understanding of CSF leaks and associated conditions, such as intracranial hypotension and to secure diagnostic and treatment advancement. The charity works passionately to shine light upon this under-diagnosed condition. We are all affected by CSF Leaks ourselves, so we are very much an organisation run by CSF leak patients for CSF leak patients.
We’re here for the cure! Everything Cure Parkinson’s does aims to move us closer to the goal, of finding new treatments to slow, stop or reverse the progression of Parkinson’s. Curing Parkinson’s needs world-class collaborative science involving researchers, clinicians, the pharmaceutical industry and, most importantly, people who are living with Parkinson’s. This collaboration is at the heart of Cure Parkinon’s research programme.
The Daisy Garland exclusively supports children and young adults with drug-resistant epilepsy, and their families. Our extensive funding of ketogenic dietitians within the NHS has been instrumental in bringing the ketogenic diet to the forefront in the UK, helping improve the lives of thousands of children. Our first-hand experience of the ketogenic diet and SUDEP gives us a unique understanding of the diverse needs associated with complex epilepsy, and our wide ranging tailored support gives families better options and improves outcomes. We are committed to advancing awareness and understanding of this condition: our printed resources are free for medical professionals and service providers.
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 come to London to hold clinics to assess the FD sufferers as well as guide UK doctors in the specialised expertise.
FND Action support people across the UK who have been diagnosed with Functional Neurological Disorder (FND). The charity also advocates for the cause across health services, social care and the public sector to improve the lives of those living with the condition.
FND Dimensions is a registered charity that supports people diagnosed with Functional Neurological Disorder. The aims of the charity are simply, to create a safe environment where those diagnosed with FND can come together, for mutual support without the fear of being judged because of their symptoms. The aim is to give people the opportunity to share their experiences and knowledge and ask questions of each other, either in ‘face to face’ meet ups or online. The charity also supports family and carers through groups of their own, to help come to terms with and share their experiences of supporting someone with FND. The ethos is to carry out the above in a spirit of, ‘Mutual Support and Mutual Respect’ where the isolation of FND can be broken and all individuals are valued equally.
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.
Glut1 Deficiency UK is a non-profit family led charity dedicated to improving the lives of those in the Glut1 Deficiency community through its mission of:
- Increasing awareness of Glut1 Deficiency
- Improved education of families and health professional in relation to Glut1 Deficiency
- Advocacy for families and patients impacted by Glut1 Deficiency
- Support and funding for Glut1 Deficiency research
GAIN offers support and information to those affected by Guillain-Barré syndrome, CIDP and other dysimmune neuropathies throughout Britain and Ireland.
Headway is a UK-wide charity that works to improve life after brain injury through the provision of support to survivors and their families. It also campaigns to raise awareness and reduce the incidence of brain injury, while supporting a network of local Headway charities across the country.
Hereditary Brain Aneurysm Support is a not-for-profit organisation launched in 2022. It aims to provide information, advice and peer support for people affected by hereditary, or familial, intracranial aneurysms (FIAs) and their families.
HBA Support is a patient-focused organisation which provides a platform for people to share their experiences, and works to increase research and understanding of FIAs within the clinical community and wider society.
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.
Intractable is the first UK epilepsy charity helping children and young adults with privately prescribed medicinal cannabis costs.
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.
MS Together is a new charity which exists to provide services of advice and support to people affected by Multiple Sclerosis (MS), with a particular focus on those aged 18-35 living with MS. It offers a number of different methods of support ranging from informal virtual events, informational talks, a 1-to-1 support service and in person meet ups.
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 is the UK and the Republic of Ireland’s leading charity supporting people affected by multiple system atrophy (MSA) – a rare neurological disease with no known cause or cure. The charity funds research into MSA and supports those affected by the condition.
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.
The Nerve of My MS is a non profit patient organisation that supports, advocates and represents the people of black ethnic minorities living with multiple sclerosis with the following mission:
– To combat cultural stigmas in the black community towards Multiple Sclerosis by normalizing conversations on difficult topics.
– To reduce social isolation through social activities and fun gatherings.
– To grow the organisation with the participation of the black MS community to encourage volunteering and involvement.
– To become established in their local London borough so they are visible to the black MS community locally
– Work and collaborate with medical and research organisations to enable change and promote representation in the black MS community.
– To build a community of Msers from the black community through membership, social media, in-person and online events, support groups, and workshops.
– To advocate for the black MS community via social media, media, charity blogs, podcasts, radio, ms events, and conferences.
Nerve Tumours UK provides support, advice and information for people diagnosed with Neurofibromatoses, their families, carers and the medical professionals involved in their care, via a Specialist Support Network, which comprises regionally based nurses, a national helpline, a fully accessible & integrated website, regional information days, clinical guidelines and information leaflets. We believe in, and promote, equal opportunities and accessibility for all, and our support service empowers patients, enabling them to manage their condition and so achieve their potential in spite of their diagnosis.
The Neuro Therapy Network represents a thriving group of 50 independent therapy centres throughout Great Britain, and in Gibraltar and Jersey. We provide support, training, and operational guidance to member centres, as well as promoting their work nationally so that more people living with neurological and other life-limiting conditions can access their services.
NF2 Biosolutions is a patient led organisation seeking a cure or preventative treatment for NF2 by vigorously supporting next-generation biomedical technologies, such as gene therapy and immunotherapy. Their vision is a world where those living with NF2 will have access to cutting-edge solutions to live full and productive lives, free from daily physical and emotional pain or suffering. The charity increases awareness of NF2, connects patients for support and offers hope to patients and their families and ultimately to fundraise to develop treatments or a cure for NF2.
Overcoming MS is the world’s leading multiple sclerosis healthy lifestyle charity and is for everyone with MS who wants to take control of their health and wellbeing.
Although there is currently no cure for MS, they help people with MS to live well by making informed lifestyle choices. They give people clear, practical actions to take, by following an evidence-based self-management program. This program uses substantial scientific evidence of how holistic self-care, alongside medical therapies, benefits people’s physical and mental health. Knowing people can change their risk of deterioration through lifestyle choices gives hope to us all.
Pans Pandas UK is the only UK charity supporting children and families living with these conditions (Pans – Paediatric acute-onset Neuropsychiatric syndrome) and (Pandas – Paediatric autoimmune neuropsychiatric disorder associated with streptococcal infections) . The charity provides information, advocacy and community support to patients and carers. It raises awareness of the symptoms and treatment options for healthcare, educational and social work professionals so that they are better equipped to recognise when a child may have Pans or Pandas.
PAS is a patient support charity with members from all over the world. It provides information, help and support to sufferers of Pernicious Anaemia (PA), including their families and friends and strives to improve current and future diagnosis and treatment of Pernicious Anaemia by providing information to health professionals, engaging in research with the health research community, lobbying decision makers and working hard to change the way in which PA is diagnosed and treated.
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 World-Wide Fellowship of Polio Warriors
The Polio Warriors World-Wide Fellowship works to relieve the needs of Post-Polio Syndrome (PPS) sufferers around the world, by acting as a resource, by directing sufferers to support groups, medical advice, and any other means they deem necessary. Currently this includes working to raise the awareness of the millions of polio survivors living with the symptoms of one of the most debilitating neurodegenerative conditions in the world today.
The PSP Association promotes research worldwide into the cause, and effective treatment and eventual cure for progressive supranuclear palsy. 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.
The charity provides help and support to people with Restless Legs Syndrome (also known as Willis Ekbom Disease) and PLMD. RLS is usually an irresistible urge to move with uncomfortable sensations. It interferes with sleep and affects quality of life. Restless Legs UK is a small registered charity run by volunteers. Further information is available on their website
There are at least three epilepsy-related deaths a day in the UK. The majority are sudden unexpected deaths in epilepsy (SUDEP) which is not fully understood. SUDEP Action is a reporting and support centre for all epilepsy deaths and works with the bereaved and professionals to make change. Deaths can be reported confidentially via the epilepsy deaths register on their website.
Timothy Syndrome Alliance (TSA) is a global community dedicated to improving the lives of those affected by a rare genetic disorder caused by changes to a gene called CACNA1C.
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders including Timothy Syndrome and Long QT8 and to support the families and carers of those diagnosed. www.timothysyndrome.org
Tourettes Action provides free information and support for everyone affected by tourette syndrome, promotes research into better treatments and seeks to change society’s view so that all children and adults with tourette syndrome receive the practical support and social acceptance they need to lead their lives to the full.
Trigeminal Neuralgia Association UK provides information, support and encouragement to trigeminal neuralgia patients, their families and friends; raises awareness of the condition among medical professionals and members of the public; promotes research and serves as an information centre for current treatments and details of any advances being made in the treatment of trigeminal neuralgia.
The United Kingdom Acquired Brain Injury Forum is a not-for-profit coalition of organisations and individuals that seek to promote understanding of all aspects of acquired brain injury and provide information and expert input to policy makers and others to promote the interests of brain injured people and their families.
The Association of British Neurologists aims to encourage nationwide availability of excellent and equitable neurological services. It supports neurologists and neurological trainees in their clinical practice, research and academic activities and fosters communication with patient interest groups.
Association of Chartered Physiotherapists in Neurology (ACPIN)
The Association of Chartered Physiotherapists in Neurology (ACPIN) is one of the largest Professional Networks recognised by the Chartered Society of Physiotherapy. It is concerned with all aspects of physiotherapy related to the needs of neurologically impaired adults and their relatives and carers. ACPIN is a dynamic and proactive group. Its function is to encourage the pursuit of excellence in the field of neurological physiotherapy practice.
The overarching aim of BIASP is to promote the advancement of Stroke Medicine within the United Kingdom and Republic of Ireland. Their renewed strategy for 2021-2024 continues BIASP’s ambitions by leading on clinical standards, promoting research and improving training, while placing at the forefront, their commitment to sustainability, equality and diversity in their work and activities.
The British Paediatric Neurology Association is the professional organisation for doctors who specialise in the care of children with neurological disorders. Membership is open to those devoting the majority of their time to paediatric neurology, paediatric neurodisability and allied neurosciences.
In recent years neuropsychology has been one of the most exciting areas of science. Advances in technology have revealed many of the secrets of structure-function relationships in the living brain, their development across the lifespan and the impact of disease, injury and degeneration. These rapid advances have opened up many new research and clinical possibilities and so staying informed and up-to-date has never been so important. The Division of Neuropsychology (DoN) supports its members with training and advice, holds regular conferences and events, and contacts members with updates and news about the professional field throughout the year. Our membership has a powerful voice in raising the profile of psychology, developing standards and advancing the discipline. We champion the work of our members and the contribution psychology can make to society through lots of different channels.
The aims of the British Society of Physical and Rehabilitation Medicine are
- to promote the development of the understanding and management of acute and chronic disabling diseases and injuries, and their consequences for the individual patient, their carers, their medical and other attendants, and society at large.
- to promote the specialty of Rehabilitation Medicine, being defined as the application of medical skill to the diagnosis and management of disabling disease and injury of whatever cause and affecting any system of the body.
- to advance the education of health and other professionals and the general public in the area of disability
- to develop and promote standards for clinical care and professional working in the specialty and mechanisms for audit, appraisal and review to ensure that those standards are maintained,
- to promote and facilitate research in the field of rehabilitation to support the evidence base which underpins good clinical practice in the specialty.
The aims of the Independent Neurorehabilitation Alliance are
- to raise the profile of the benefits of neurorehabilitation amongst those in positions of influence.
- to embrace and learn from its members by providing a forum to share and collaborate for the benefit of those needing neurorehabilitation services.
- to improve understanding of what good neurorehabilitation looks like and ensure it is available to all those who need it.
- to provide a voice for independent neurorehabilitation providers.
- to enhance the delivery of best practice and innovation in neurorehabilitation.
The Neurology Academy is an innovative education provider for clinicians, specialist nurses and professions allied to medicine. Their practical applicable training focuses on disease management and service transformation whilst encouraging leadership at a grassroots level. Individual specialty areas are led by an Academic Faculty of practicing healthcare professionals who shape the content, mentorship, and direction of that specialism’s Academy. Read about why they joined the Alliance here
The Black Country Neurological Alliance (BCNA) is an umbrella organisation, led by people who are affected directly or indirectly by a neurological condition. We are part of the Neurological Alliance but are focused on the people of the Black Country, bringing them closer to services available from both statutory and voluntary bodies.
The Hampshire Neurological Alliance (HNA) covers Hampshire, Portsmouth, Southampton and the Isle of Wight. It is the local voice for people with neurological conditions and their family and carers, in the alliance area. By working together we aim to ensure a better quality of life for each and every individual affected by a neurological condition.
Merseyside and Cheshire Neurological Alliance
Merseyside and Cheshire Neurological Alliance brings together a range of neurological conditions charities to work on agreed priority areas in particular with health and social care providers. We have great links with Walton Neurological centre and often meet there. The group also includes a discussion on welfare benefits at each of its meetings.
YHANO is a collaborative group representing neurological third sector organisations in Yorkshire and the Humber. YHANO was set up in 2009 building upon the experience of the original VOWNnet (Voluntary Organisations Workers in Neurology Network). Membership is open to any employee of neurological third sector organisations in Yorkshire and the Humber whose roles include a remit to influence health and social care service provision.
“Over 3.5 million people in the UK are living with rare conditions, and many of these conditions affect parts of the body such as the brain, spinal cord, nerves and muscles. The Genetic Alliance is delighted to work together with the Neurological Alliance to champion the voices of people living with rare neurological conditions and drive improvements in care.”
National Voices is an umbrella organisation, set up to ensure that the needs and preferences of those affected by government health and social care policy are given full weight in its development and implementation. It brings together a broad and diverse coalition of voluntary sector organisations representing patients, service users and carers, and ensures that their voices are taken into account from the earliest possible stages of policy development by providing an effective channel of communication with policy makers.
The Neurological Alliance of Scotland is an umbrella body of organisations and groups representing people living with or affected by a neurological condition.
Corporate supporter status is open to for-profit organisations, who cannot vote at the AGM or nominate a trustee, and cannot influence our policy direction, but are able to participate in Alliance events and keep up to date with policy and news affecting people with a neurological condition. Corporate supporter status is not income assessed.
Our 2023 corporate supporters are:
- Boston Scientific
- Merck Serono