Our members
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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Full members
Ataxia UK supports medical research into causes and potential therapies. They provide information, advice and support to people affected by ataxia.
www.ataxia.org.uk
Autistica is the UK’s leading autism research charity, which works to ensure everyone affected by autism has the chance of a long, happy, healthy life.
www.autistica.org.
Batten Disease Family Association
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.
www.bdfa-uk.org.uk
The Brain and Spine Foundation aims to improve the quality of life for people with neurological disorders and to reduce neurological disability through research, education, and patient and carer support and information programmes.
www.brainandspine.org.uk
Brain and Spinal Injury Charity (BASIC)
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.
www.basiccharity.org.uk
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.
www.brainresearchuk.org.uk
Cavernoma Alliance UK is a support group for those with cavernoma. It also aims to makes the general public aware of cavernoma.
www.cavernoma.org.uk
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.
www.cmt.org.uk
The Cure Parkinson’s Trust is a patient led charity that funds research which will have an impact on the lives of people with Parkinson’s, with the hope of an eventual cure for the condition.
www.cureparkinsons.org.uk
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.
www.thedaisygarland.org.uk
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.
www.differentstrokes.co.uk
Downs Syndrome Research Foundation UK
A charity born out of a parent’s love and a passion for the very best evidence-based interventions. We are the UK’s only Down’s syndrome research charity. Our vision is long, healthy, happy life for people with DS and their families.
www.dsrf-uk.org
The Dystonia Society provides support for people with dystonia and their families through the promotion of awareness, the publication of literature and medical research and welfare.
www.dystonia.org.uk
Epilepsy Action provides advice and information services for people with epilepsy, their families and those who care for them. They also campaign for improved health and social services.
www.epilepsy.org.uk
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.
www.epilepsyresearch.org.uk
Familial Dysautonomia UK (FDUK)
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.
www.familialdysautonomia.co.uk
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.
www.fndaction.org.uk
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.
fndhope.org.uk
Guillain Barré and Associated Inflammatory Neuropathies (GAIN)
GAIN offers support and information to those affected by Guillain-Barré syndrome, CIDP and other dysimmune neuropathies throughout Britain and Ireland.
www.gbs.org.uk
Huntington’s Disease Association
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.
www.hda.org.uk
IIH UK is dedicated to providing sources of information and support to those with Idiopathic Intracranial Hypertension, and all who support them. They promote awareness, facilitate research, and advocate the Charity’s public, social and support activities.
www.iih.org.uk
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.
https://www.matthewsfriends.org
The Migraine Trust focuses on those who suffer from migraine and other headache conditions. They aim to maximise management and minimise impact of the condition through funding research, education, promotion and support.
www.migrainetrust.org
Motor Neurone Disease Association
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.
www.mndassociation.org
Multiple Sclerosis National Therapy Centres
The MS National Therapy Centres harness the power of collective action to support member centres in the delivery of services which will improve the quality of life for everyone using those services.
www.msntc.org.uk
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.
www.mssociety.org.uk
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.
www.mstrust.org.uk
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.
www.msatrust.org.uk
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.
www.myaware.org
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.
www.narcolepsy.org.uk
The National Brain Appeal is the charity dedicated to raising much needed funds for The National Hospital for Neurology and Neurosurgery in Queen Square London.
www.nationalbrainappeal.org
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.
www.tremor.org.uk
Parkinson’s UK provides practical support, information and advice to people with Parkinson’s and their carers. They fund research to investigate the causes of Parkinson’s, to improve the treatments available and to develop new treatment techniques.
www.parkinsons.org.uk
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.
www.poliosurvivorsnetwork.org.uk
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.
pspassociation.org.uk
Ring 20 Research and Support UK CIO
Supporting and connecting families, individuals and professionals who are affected by or who come into contact with Ring Chromosome 20 Syndrome, an ultra-rare epilepsy syndrome.
ring20researchsupport.co.uk
Spinal Muscular Atrophy Support
We support and empower anyone affected by SMA. We are advocates for better services and access to new treatments so that people affected by SMA are empowered and enabled to live full lives. We are committed to help fund and facilitate research and to raise public and professional awareness of SMA.
www.smauk.org.uk
Spotlight Young Onset Parkinson’s
We aim to be the ‘go to’ organisation for people with Young Onset Parkinson’s – providing or enabling access to information and support for those diagnosed at a younger age (under 50).
www.spotlightyopd.org
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.
www.sudep.org
Sue Ryder provides specialist care and support to people with a neurological condition. They aim to be the first choice in their chosen field of activity.
www.sueryder.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.
www.tourettes-action.org.uk
The Transverse Myelitis Society provides information and support for transverse myelitis sufferers, families and carers.
www.myelitis.org.uk
Trigeminal Neuralgia Association UK
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.
www.tna.org.uk
UK Acquired Brain Injury Forum
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.
www.ukabif.org.uk
Associate members
Association of British Neurologists
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.
www.abn.org.uk
British Paediatric Neurology Association
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.
www.bpna.org.uk
Division of Neuropsychology (British Psychological Society)
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.
www.bps.org.uk
Regional members
Black Country Neurological Alliance
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.
www.bcna.org.uk
Bolton Neuro Voices
Bolton Neuro Voices is a small voluntary organisation committed to improving the quality of life of people with long-term neurological conditions and ensuring that their voices are heard by commissioners and providers.
East Midlands Association of Neurological Organisations (EMANO)
We are a Neurological Alliance formed in November 2013 to bring together all the charities, organisations and individuals with an interest in neurological diseases and services in Cumbria.
cumbrianeurologicalalliance.wordpress.com
Greater Manchester Neurological Alliance
We’re members of the Neurological Alliance and board members of the Gtr Manchester Neuro Operational Delivery Network, Neurology Sub-Group at Salford Royal Hospital, Major Trauma and Critical Care Group and the Steering Group for new Community Neuro Rehab Services in north Manchester.
www.gmna.co.uk
Hampshire Neurological Alliance
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.
www.hampshireneural.org.uk
Lincolnshire Neurological Alliance
The Lincolnshire Neurological Alliance is an association of people and voluntary organisations with an interest in people with a neurological condition, based in Lincolnshire.
www.lincolnshire-neurological-alliance.org.uk
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.
Neuro Key (formerly Tees Valley, Durham, and North Yorkshire Neurological Alliance)
We work across the Tees Valley, Durham and North Yorkshire helping people who live or care for someone with a neurological condition. A neurological condition is a health disorder involving the brain and nervous system.
www.na-tvdny.org.uk
South West Alliance of Neurological Organisations (SWANO)
SWANO exists to provide information about the most common neurological conditions in the South West, to give a brief overview of the needs of people affected by these conditions and to provide information about neurological charities working in the NHS South West area.
West Berkshire Neurological Alliance
We are an association of people and voluntary organisations with an interest in people with a neurological condition, based in and around Berkshire West.
www.wbna.org.uk
Yorkshire & Humberside Association of Neurological Organisations (YHANO)
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.
www.yhano.org.uk
Full reciprocal members
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.
www.nationalvoices.org.uk
The Neurological Alliance of Ireland
The Neurological Alliance of Ireland is the national umbrella body representing over thirty not for profit organisations working with people with neurological conditions and their families.
www.nai.ie
The Neurological Alliance of Scotland/The National Neurological Advisory Group (Scotland)
The Neurological Alliance of Scotland is an umbrella body of organisations and groups representing people living with or affected by a neurological condition.
www.scottishneurological.org.uk
The Neurological Alliance of Wales
The Wales Neurological Alliance is a focused and purposeful forum of not-for-profit organisations and groups representing many thousands of people affected by neurological conditions in Wales.
www.walesneurologicalalliance.org.uk