As a campaigning organisation, the Neurological Alliance doesn’t have the resources to provide individual support to people with a neurological condition – but in this section we provide information about the organisations which can. These organisations aim to inform and advise patients, carers, and other people affected by a neurological condition.
41 West Street
London, E11 4LJ
Tel: 020 8556 9955
Action Duchenne was established to find a cure or more effective medicines to treat Duchenne Muscular Dystrophy. Since 2001, they have funded key research projects and supported clinical trials that are making real progress towards our key aim of fighting for the best care for those living with Duchenne and working towards a cure.
Action for M.E.
PO Box 2778
Tel (membership and general): 0845 123 2380 / 0117 927 9551
Helpline: 0845 123 2314
Email (membership and general): firstname.lastname@example.org
Email (support): email@example.com
Action for M.E. is the UK’s leading charity dedicated to improving the lives of people with M.E. They campaign for more research, better treatments and services, and provide information and support to people affected by M.E.
ADDER (Action for Dystonia, Diagnosis, Education and Research)
Advances the education of the public in relation to the sickness and distress caused, promotes the treatment of people with dystonia and offers support and welfare to patients, their carers and families. Promotes awareness and encourages research amongst the medical profession of dystonia.
Aerotoxic Association provides support for sufferers of Aerotoxic Syndrome, including information, latest news and access to academic papers.
Alzheimer’s Society is a membership organisation, which works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland. Many of their 25,000 members have personal experience of dementia, as carers, health professionals or people with dementia themselves, and their experiences help to inform the Society’s work.
Association of British Neurologists
27 Boswell Street
London WC1N 3JZ
Tel: 020 7405 4060
The Association of British Neurologists (ABN) 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.
Aims to alleviate the distress of A-T through funding research, supporting families and raising awareness.
Conducts fundraising to support medical research into causes and potential therapies. Provides information, advice and support to people affected by Ataxia.
Batten Disease Family Association
PO Box 504
Fleet GU51 9GE
General tel: 01252 416110
Support tel: 01420 556202
The Batten Disease Family Association (BDFA) 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 are based in Hampshire but work with children, young people, families and professionals across the UK.
Brain and Spinal Injury Charity (BASIC)
Provides information and support for people affected by neurological conditions. Runs a number of self help groups around the UK. BASIC also promotes research into neurological conditions.
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.
Brain Research Trust
Brain Research Trust (BRT) is one of the UK’s leading charities in the field of neurological research. The were established in 1971 to promote and support research into the causes, treatment, prevention and cure of neurological diseases. They do this by funding basic and clinical research at University College London’s Institute of Neurology (IoN).
Brain Tumour UK
Brain Tumour UK is the leading, caring charity committed to fighting brain tumours. Their personalised support is available online, on the phone, by email and through support groups. Their scientific research improves the quality of life for brain tumour patients and identifies better treatments. They raise awareness to change things for the better, for everyone affected by a brain tumour.
British Paediatric Neurology Association
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.
British Polio Fellowship
Provides a wide range of information and advice about disability in general, polio and post-polio syndrome. Also provides support to people affected by polio.
British Syringomyelia & Chiari Society, The Ann Conroy Trust
Provides support for suffers and carers of syringomyelia and related conditions. Works to inform health professionals, families and the general public about the condition. Also supports research in to syringomyela and related conditions.
Cavernoma Alliance UK
Cavernoma Alliance UK, formed in February 2005 (as Angioma Alliance UK) and constituted as a charity in July of the same year, is comprised of cavernoma patients from all over the UK.
Cavernoma Alliance UK aims to provide a support group for those with cavernoma through events such as an annual forum in London and a mailing list. It also aims to makes the general public aware of cavernoma.
Child Brain Injury Trust
Support and information for families and professionals who are affected by acquired brain injuries. CBIT is a national charity delivering projects and support through a helpline, parent support groups, books, leaflets and a web site. CBIT operates a small grant programme for children and young people, work in a participative environment and specialise in influencing the way in which serves are deliver.
Opening Hours – 9.30am to 3pm, Mon & Fri;, 9am to 12noon, Wed; variable at other times.
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. Their aims and objectives are to:
- Offer assistance and support to those with this condition
- 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
Cure Parkinson’s Trust
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.
Developmental Adult Neuro-Diversity Association (DANDA)
DANDA is the first national charity in the world specialising exclusively in all types of neurodiversity in adulthood, user-led or non user-led. DANDA helps adults with developmental dyspraxia, dyslexia, Asperger’s syndrome, AD(H)D, dyscalculia and related conditions reach their full potential. DANDA also provides support and raises awareness.
Run by stroke survivors for stroke survivors. 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. Organises exercise classes nation-wide.
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.
The Encephalitis Society
The Encephalitis Society supports adults and children affected by Encephalitis, their families and carers by providing advice and information and working at national level to improve services.
Provides advice and information services for people with epilepsy, their families and those who care for them. Also campaigns for improved health and social services.
PO Box 112
Tel (support): 01235 772852
Tel (general enquiries): 01235 772850
Email (general enquiries): firstname.lastname@example.org
Email (information and bereavement support): email@example.com
Epilepsy Bereaved is the leading voluntary organisation in the UK and Internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths. They work with leading experts to bring the taboo of SUDEP out of the shadows.
Chalfont St Peter
Tel: 01494 601 300
Helpline: 01494 601 400
Epilepsy Society is a leading national epilepsy medical charity working for everyone affected by epilepsy, through research, awareness campaigns and expert care.
Fibro Action work to educate people about Fibromyalgia Syndrome (Fibro), including people with Fibro, their family, friends and carers, healthcare professionals and the public at large, as well as providing support to patients. Their vision is that the needs of people with Fibro are universally recognised and met, with fast and accurate diagnoses and easy access to optimal treatment programs available to all people with Fibro.
Fighting Strokes lobby for stroke care policy changes; educate and promote stroke recovery awareness and provide practical advice and support to patients, their families and friends. Their goal is to improve patient outcomes and speed up recovery rates and levels.
Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time.
The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.
Glenside was established by Denis and Clare Barry in 1982 and originally provided dementia care for the elderly in residential homes on the current location in South Newton, near Salisbury. It has gradually transitioned to specialise in neuro rehabilitation.
In 1998 their first brain injury rehabilitation facility (Newlands) opened and Glenside has since grown to offer a complete range of inpatient and outpatient medical care and rehabilitation services to adults who are living with severe physical, cognitive or behavioural impairments resulting from long-term neurological conditions, including acquired or traumatic brain injury.
Guillain Barré Syndrome Support Group
Heckington Business Park
Tel: 01529 469910
Helpline (UK) 0800 374803
Helpline (Republic of Ireland) 0044 1529 415278
Registered Charity 327314
The GBS Support Group is a registered charity based in the United Kingdom that offers support and information to those affected by Guillain-Barré syndrome, CIDP and other dysimmune neuropathies throughout Britain and Ireland.
Headway – The Brain Injury Association
190 Batnall Road
Helpline: 0808 800 2244
Tel: 0115 924 0800
Email (general enquiries: firstname.lastname@example.org
Email (helpline): email@example.com
Supports people with brain injury, their families and carers and concerned professionals. Has 115 groups throughout the UK, 57 of which run Activity/Rehabilitation Centres called Headway Houses. Campaigns for improved statutory services for people with brain injury.
6 Market Road
London N7 9PW
Helpline: 0845 123 2372 (Opening hours 10am to 1pm, Monday to Friday, during term time).
Office tel: 0845 120 3713
Email (Helpline Service): firstname.lastname@example.org
Email (Other Enquiries): email@example.com
HemiHelp is a membership organisation offering information and support to children and their families affected by hemiplegia.
Hemiplegia is a neurological condition that weakens one side of the body, and affects one child in a thousand. It is sometimes described as a form of cerebral palsy, and the effects are similar to those of a stroke.
Huntington’s Disease Association
Provides care, advice, support and education to both families and professionals caring for people affected by Huntington’s Disease.
Independent Healthcare Advisory Service (IHAS)
The Independent Healthcare Advisory Services (IHAS) bring together members and specialists across the health care industry, to share a unique level of knowledge, experience and understanding.
Integrated Neurological Services
Integrated Neurological Services is a Richmond-based charity providing long-term rehabilitation and support for people with neurological conditions. INS is a registered charity set up to encourage independence and self-help particularly for people with Mutliple Sclerosis, Parkinson’s Disease or who have had a Stroke. They enable people to help themselves in the company of others: to recover their sense of social inclusion, to reach their potential and to make the best of their abilities in order to achieve their optimum quality of life.
Joint Epilepsy Council
An umbrella organisation that exists to enable epilepsy organisations to work together for the benefit of people who have epilepsy.
Matthew’s Friends provides information, research, training and support for parents and professionals regarding dietary treatment for epilepsy. Their goals is to improve services and lives of adults and children with refractory epilepsy.
ME Association Head Office
7 Apollo Office Court
Tel: 01280 818964
ME Connect Helpline: 0844 576 5326
Email (administration): firstname.lastname@example.org
Email (ME Connect): email@example.com
The ME Association was founded in 1976. It funds and supports research into ME, and provides information and support, education and training.
The Migraine Trust
Focuses on those who suffer from migraine and other headache conditions. Aims to maximise management and minimise impact of the condition through funding research, education, promotion and support.
Motor Neurone Disease Association
Works to ensure that people affected by MND secure the highest standards of care in order to achieve quality of life. Stimulates and funds research into the causes of MND. Provides a helpline, information, equipment loan, financial support, a network of regional care advisers, local branches and volunteer visitors.
Multiple Sclerosis Society
Provides support and information for people affected by MS through a network of branches (about 370 around UK) and through helpline and publications. Carries out research into MS and policy work and campaigns on MS issues. Also provides respite and holiday homes.
Multiple Sclerosis Trust
The Multiple Sclerosis Trust is a leading UK charity for people with MS, their families and friends, and for the health and social care professionals who work with them. The MS Trust offers practical, deliverable solutions:
- Information about MS which is positive and constructive
- Education for nurses and other professionals
- Research which is relevant to people who live with MS
- Support for MS specialist nurses
Multiple System Atrophy Trust
The Multiple System Atrophy (MSA) Trust was established in 1997 to offer information and support to all people affected by Multiple System Atrophy. They aim to provide information and support to people living with MSA and their families; raise awareness of the condition and its treatment, especially among healthcare professionals; and promote and sponsor research into MSA, its cause, treatment and ultimately its cure.
Muscular Dystrophy Campaign
Meets the needs of people with neuromuscular conditions in the UK, their carers and their families. Searches for treatments and cures for over 60 muscle-wasting conditions. Provides support services to families and individuals through branches, a network of care advisors attached to specialist hospitals, a central information office and regular publications.
Myasthenia Gravis Association
The Myasthenia Gravis Association (MGA) was set up in 1976 and was registered as a charity in 1995. MGA offers support to Myasthenics and their families, increasing public and medical awareness and raising funds for research. Myasthenia Gravis is a severe muscle weakening disease.
MGA acts 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. MGA also puts members in touch with other appropriate agencies for any specific problems they are facing, for example problems with benefits.
Narcolepsy UK is an association of people with narcolepsy, their relatives and others interested in improving their lot. Its registered objects are the benefit, relief and aid of persons suffering from narcolepsy.
National ME Centre
Provides consultant led clinics to confirm the diagnosis of ME and offer advice on management (appointments available via GP or consultant referral only). Offers one to one outpatient appointments with trained support workers who give advice in managing the illness. Provides some information about services for people with ME and chronic fatigue syndrome.
National Tremor Foundation
Provides patients and their families with information on essential tremor. Maintains a world-wide referral network of specialists experienced in the clinical care of essential tremor patients. Assists in the formation of local independent support groups for patients
National Voices was formed in September 2008 as an umbrella organisation, and was 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.
This charity provides non-medical information and support to people with a neurological condition and their families, including library facilities, project and office base for neuro charities, programme of conferences and meetings. Facilitates Merseyside and Cheshire Neurological Alliance.
The Nerve Centre Kirklees
The Nerve Centre supports people living with a neurological condition and those who care for them. They also actively campaign locally and nationally for improved services and awareness, forming part of the Neurological Alliance.
Information and support for pain sufferers, those who care for them and about them.
Provides practical support, information and advice to people with Parkinson’s and their carers. Funds research to investigate the causes of Parkinson’s, to improve the treatments available and to develop new treatment techniques.
PJ Care is an award winning and leading independent provider of Specialist Nursing Care and Neuro-Rehabilitation for people with physical illnesses, restricted mobility and challenging behaviours as a result of organic, degenerative or neurological disorders. These include Acquired Brain Injuries, Strokes, Huntington’s Disease, Multiple Sclerosis, Muscular Dystrophy, and Spinal Cord Injuries, as well as various progressive terminal illnesses and early onset dementias.
PJ Care also specialises in providing care for complex Frontal Lobe Dementias like Alzheimer’s and Picks Disease.
Primary-Care Neurology Society (P-CNS)
The Primary Care Neurology Society is a network of like minded healthcare professionals, organisations and partnering companies who all share an interest in primary care neurology. The Society’s main aim is to generate greater awareness and interest in neurology among professionals with an interest, or working, in primary care to help improve the quality of healthcare services to people suffering neurological symptoms and defined illnesses/conditions.
Polio Survivors Network
PO Box 954
Tel. 01522 888601
The Polio Survivors Network is a Post-Polio Information Service run by polio survivors for medical professionals and polio survivors, their families and friends. The extensive website contains an online library of 100+ catalogued medical articles and other information. They produce quarterly 20 page newsletters. Email enquiries are welcomed and answered.
The PSP Association
Promotes research worldwide into the cause, an effective treatment and eventual cure for Progressive Supranuclear Palsy. Provides information and support to afflicted families across Europe. Raises awareness of the disease, particularly amongst relevant health professionals and amongst the general public at large, mainly in the UK. Fundraises to enable the above to take place.
Queen Elizabeth Foundation Neuro Rehabilitation Services
Tel: 01372 841100
Neuro Rehabilitation Services provides acquired brain injury services through their rehabilitation centre in Surrey, offering assessment, intensive neuro rehabilitation and education. Primarily, they work with young adults between 16 and 35 years of age, who have acquired disabilities and associated learning difficulties as a result of acquired brain injury.
They tailor their acquired brain injury rehabilitation services to meet the needs of each individual. They are registered with the Care Quality Commission and accredited by OFSTED. They are also a National Specialist College.
Ring 20 Chromosome Foundation
The Ring Chromosome 20 Foundation was created to provide information, resources and assistance to families affected by ring chromosome 20 syndrome. Our hope is to share as much information as possible so that doctors and families can better understand the syndrome and its treatment.
Royal Hospital for Neuro-disability
The Royal Hospital for Neuro-disability is a national medical charity helping people who are affected by an acquired brain injury. Some have been in car accidents, been mugged or might simply have fallen down the stairs. Others have had a stroke, a heart attack, or have an illness affecting their brain such as multiple sclerosis or Huntington’s disease.
The RHN offers an extensive range of rehabilitation and long-term care services, including specialist therapies and state of the art technology – giving people they people living with neuro-disability the best possible quality of life, whatever their level of ability. Specialists all work under one roof, based in Putney, London. The RHN’s academic art, the Institute of Neuropalliative Rehabilitation researches and informs clinical development, and provided specialist course, lectures and seminars.
Scope is the disability organisation in England and Wales whose focus is people with cerebral palsy. Their aim is that disabled people achieve equality: a society in which they are as valued and have the same human and civil rights as everyone else.
The Shane Project
The Shane Project exists to raise awareness, provide support, information, advocacy and empowerment to people with MS, their carers and relatives, particularly in the African Caribbean and minority ethnic communities.
Provides services to individuals with spina bifida and/or hydrocephalus, their families and carers; including support, advocacy and advice. Provides information on all aspects of the disabilities. Also supports research into medical, scientific and social aspects. Works to improve statutory services for those affected by these disabilities.
Speakability supports people with aphasia, and those that care for them, through its information service and network of self-help groups. We campaign to increase awareness of aphasia as a long-term condition. We provide training to paid and unpaid carers on communication skills.
The Stroke Association
Aims to help all in England and Wales affected by stroke. Develops and provides services, supports research, disseminates knowledge, provides training and education to improve standards of care.
Sue Ryder Care
16 Upper Woburn Place
Tel: 0845 050 1953
Provides specialist care and support to people with a neurological condition. They aim to be the first choice in their chosen field of activity. “Care that liberates lives.”
Provides free information and support for everyone affected by Tourette Syndrome (TS), promotes research into better treatments and seeks to change society’s view so that all children and adults with TS receive the practical support and social acceptance they need to lead their lives to the full.
Transverse Myelitis Society
Provides information and support for TM sufferers, families and carers.
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.
Tuberous Sclerosis Association
Provides support for individuals affected by Tuberous Sclerosis Complex and those caring for them; education of professionals, sufferers and the general public. Encourages and sponsors research.
UK Acquired Brain Injury Forum (UKABIF)
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 Forum encourages the development of good practice by setting up working parties and conferences to discuss any aspect of ABI and supports the All Party Parliamentary Group on Acquired Brain Injury.
Young Epilepsy exists to improve the lives of children and young people with epilepsy to enable them to fulfill their potential and ensure they have the best quality of life.
A-Z of neurological conditions
The Brain and Spine Foundation also has a concise list of neurological conditions. These are listed alphabetically, with links to helpful organisations and websites.
If you know of any organisations that you think should be displayed on this page, please email your suggestion to firstname.lastname@example.org