Links to National Alliance member
sites and other useful sites
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Alzheimer's Society
website: www.alzheimers.org.uk
The leading care and research charity for people with dementia. Provides information and education, support for carers, and quality day and home care. Funds medical and scientific research and campaigns for improved health and social services and greater public understanding of dementia.
Ann Conroy Trust (formerly
Ann's Neurological Trust Society)
website:
www.theannconroytrust.org.uk
Provides support for suffers and carers of syringomyela 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.
Association for Spina Bifida and Hydrocephalus (ASBAH)
website: www.asbah.org
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.
Ataxia Group of Great Britain & N. Ireland
website: www.ataxia.org.uk
Conducts fundraising to support medical research into causes and potential therapies. Provides information, advice and support to people affected by Ataxia.
Ataxia-Telangiectasia Society
website: www.atsociety.org.uk
Aims to alleviate the distress of A-T through funding research, supporting families and raising awareness.
Brain and Spinal Injury Charity (BASIC)
website: www.basiccharity.org.uk
Provides information and support for people affected by neurological conditions. Runs a number of self help groups around the UK. Promotes research in to neurological conditions.
Brain and Spine Foundation
website: www.brainandspine.org.uk
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.
British Acoustic Neuroma Association
website: www.bana-uk.com
Provides information and support for people affected by acoustic neuroma. Promotes and supports research. Involved in setting up local support groups.
British Polio Fellowship
website: www.britishpolio.org.uk
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 Polio Fellowship: Berkshire Branch
website: www.berkshirebpf.fsnet.co.uk
email: norman.jones@ntlworld.com
Pursues the aims of the British Polio Fellowship in Berkshire.
Charcot-Marie-Tooth (CMT) United Kingdom
website: www.cmt.org.uk
Offers a service of support, advice and information for people who are affected by Charcot-Marie-Tooth Disease - also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy (PMA).
Child Brain Injury Trust
website: www.cbituk.org
Collects and disseminates information about treatment and services for children with acquired brain injury aimed at professionals (all agencies) and families. Campaigns for better treatment and services. Promotes research. Provides financial and emotional support for the worst affected families.
Dementia Relief Trust
website: www.dementiarelief.org.uk
Provides specialist Admiral nurse services as well as information and support for carers, professionals and public. Committed to raising the awareness of the needs of carers.
Different Strokes
website: www.differentstrokes.co.uk
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
website: www.dystonia.org.uk
Provides support for people with dystonia, and their families, through the promotion of awareness, the publication of literature and medical research and welfare.
Encephalitis Support Group
website: www.esg.org.uk
Supports individuals and families of people affected by encephalitis. Raises awareness amongst professionals about the condition and problems experienced. Promotes research into encephalitis.
Epilepsy Action
website: www.epilepsy.org.uk
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.
Greater Manchester Neuro Alliance
website: www.gmneuro.org.uk
A group of voluntary organisations working together to improve neurological services by sharing ideas and expertise. Provides information and support for patients and professionals.
Guillain-Barré Syndrome Support Group
website: www.gbs.org.uk
Provides emotional support to sufferers and their families. Provides literature to sufferers, families, medical
professionals. Educates public and medical community about the Support Group and maintains awareness of the illness. Fosters research. Provides, where possible, visits to those currently suffering.
Head Injury Re-Education (H.I.R.E)
email: hire.office@virgin.net
Aims to increase awareness of the education needs of children and adults with acquired head injury. Provides information to families, carers and other interest professionals. Organises conferences, study days and work shops and produces printed information.
Headway - The Brain Injury Association
website: www.headway.org.uk
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.
HemiHelp
website: www.hemihelp.org.uk
Provides information and support for children with hemiplegia (acquired and congenital) and aims to increase public and professional awareness of hemiplegia and its associated conditions.
Huntington's Disease Association
website: www.hda.org.uk
Provides care, advice, support and education to both families and professionals caring for people affected by Huntington's Disease.
Joint Epilepsy Council (JEC)
website: www.jointepilepsycouncil.org.uk
The Joint Epilepsy Council of the U.K. and Ireland (JEC) is an umbrella
organisation which exists to represent the united voice of the voluntary sector
and presents evidence based views on the need to improve services for people
with epilepsy, their families, and carers in the UK and Ireland.
Lincolnshire Post-Polio Network
website: www.ott.zynet.co.uk/polio/lincolnshire/
Run by and for people who have had polio and their families and friends. Produces newsletter and regularly updated list of medical articles and other information.
ME Association
website: www.meassociation.org.uk
Aims to promote research into cause, effect and treatment of the
illness and to increase public awareness of ME. Provides training for health & other professionals, raises funds for research and campaigns for appropriate high-quality services for sufferers.
The Meningitis Trust
website: www.meningitis-trust.org
The Meningitis Trust is the UK's longest established meningitis charity. It
helps around 20,000 people each year through its range of specialist services,
giving vital support to those who have been affected by this life-changing
disease.
Mersey Neurological Trust
website:
www.neurosupport.org.uk
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 Mersey Neurological Charities Group.
Migraine Trust
website: www.migrainetrust.org
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 (MND) Association
website: www.mndassociation.org
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.
MS Society of Great Britain and Northern Ireland
website: www.mssociety.org.uk
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
website: www.mstrust.org.uk
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
Muscular Dystrophy Campaign
website: www.muscular-dystrophy.org
Meets the needs of people with neuromuscular conditions in the UK, their carers and their families. Searches for treatments and cures for all these muscle-wasting conditions. Provides support services to families and individuals through branches, a national family care officer network attached to specialist hospitals, a central information office and regular publications.
Myasthenia Gravis Association
website: www.mgauk.org
Has a network of branches across the UK providing support for myasthenics and their families. Raises awareness of Myasthenia Gravis both with the medical profession and the public. Funds medical research into alleviation and ultimate cure of MG.
Narcolepsy Association UK (UKAN)
website: www.narcolepsy.org.uk
Supports narcoleptics with information, advice and help.
National ME Centre
website: www.nmec.org.uk
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.
The National Society for Epilepsy
website: www.epilepsynse.org.uk
Seeks to enhance the health and well-being of people with epilepsy by improving clinical treatment and care and by the provision of health information to people with epilepsy, to health professionals and the general public.
National Tremor Foundation
website: www.tremor.org.uk
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.
The Neurofibromatosis Association
website: www.nfauk.org
Provides help, support and advice to those affected by neurofibromatosis, their families and the professionals working with them. Works largely through an expanding team of hospital based (usually Department of Genetics)
neurofibromatosis coordinators who provide practical support to patients. Also provides information and funds research.
Pain Concern
website: www.painconcern.org.uk
Information and support for pain sufferers, those who care for them and about them.
Parkinson's Disease Society of the UK
website: www.parkinsons.org.uk
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.
The Progressive Supranuclear Palsy (PSP Europe) Association
website: www.pspeur.org
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 and fundraises.
Rett Syndrome Association UK (RSAUK)
website: www.rettsyndrome.org.uk
Provides help, advice and support to parents, carers, siblings and professionals - anybody involved with a child or adult suffering from Rett Syndrome.
Sandwell Neurological Alliance
website:
www.webwell.org.uk/Health-Organisations/Sandwell-Neurological-Alliance.htm
Sandwell Neurological Alliance is involved in raising the awareness of the needs
of people with neurological conditions. It provides support services, including
information of where to get help and also acts as a consultation forum for
people with neurological disorders.
Scope
website: www.scope.org.uk
A national disability organisation whose focus is cerebral palsy. Aims for equality for disabled people. Services include creating housing, education and employment opportunities, support for families and carers, research, advocacy, information and advice services, support for self-help groups, campaigning.
Sarah Matheson Trust for Multiple System Atrophy
website: www.msaweb.co.uk
The Sarah Matheson Trust is the official support group for sufferers from Multiple System Atrophy (MSA).
Speakability (Formerly Action for Dysphasic Adults)
website: www.speakability.org.uk
Charity who supports people with aphasia. Provides information service. Also involved in training and supporting professionals. Active in raining public awareness.
The Stroke Association
website: www.stroke.org.uk
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.
Tourette Syndrome (UK) Association
website: www.tsa.org.uk
Provides medical information, publicity, membership services, helpline, newsletter and has local support groups. Makes small medical research grants. Maintains a list of UK specialists. Holds national meetings for members.
Tuberous Sclerosis Association
website: www.tuberous-sclerosis.org
Provides support for individuals affected by tuberous sclerosis and those caring for them; education of professionals, sufferers and the general public. Encourages and sponsors research.
UK Acquired Brain Injury Forum (UKABIF)
website: www.ukabif.org.uk
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 provides 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.
Other relevant sites
Fibromyalgia Association UK
website: www.fibromyalgia-associationuk.org
Long Term Medical Condtions Alliance
website: www.ltca.org.uk
Oyster Healthcare Communications
 |
Oyster's quarterly magazines and news services in key medical
specialties provide support to primary and secondary care teams. |
website: www.oysterhc.co.uk