Links to National Alliance member sites and other useful sites

 

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Please note: these links are in alphabetical order of the name of the organisation, NOT of the condition.

Action for Dystonia, Diagnosis, Education and Research (ADDER)
website: www.actionfordystonia.co.uk

ADDER's aims and objectives are:

    To advance the education of the public in relation to the sickness and distress caused by the neurological conditions known as dystonia 
    To promote the treatment of people with dystonia and other related movement disorders 
    To offer support and welfare to patients, their carers and families 
    To promote awareness and encourage research amongst the medical profession of the neurological conditions known as dystonia

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 syringomyelia and related conditions. Works to inform health professionals, families and the general public about the condition. Also supports research in to syringomyelia and related conditions.

Ataxia UK
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. 

Berkshire Carers Service
website: www.berkshirecarers.org

Berkshire Carers Service is an information and support service for unpaid family carers in Bracknell, Reading, West Berkshire, Wokingham and the Royal Borough of Windsor & Maidenhead.

Black Country Neurological Alliance
website: www.bcneural.org.uk

Provides information and support for people affected by neurological conditions in the four boroughs of the Black Country: Dudley, Sandwell, Walsall and Wolverhampton. Promotes research into neurological conditions.

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.

Brain Tumour UK
website: www.braintumouruk.org.uk

Brain Tumour UK works to increase awareness and knowledge of brain tumours and research into the disease, to improve access to information and support, to enhance treatment and care, and to raise money to fund an extensive programme of research, education and support.

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.

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.childbraininjurytrust.org.uk

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.

Contact a Family
website: www.cafamily.org.uk

The charity holds an index of specific conditions and rare disorders.

Dementia UK
website: www.dementiauk.org

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.

Developmental Adult Neuro Diversity Association (DANDA)
website: www.danda.org.uk

DANDA is for people with conditions such as Dyspraxia, ADHD, and Asperger's Syndrome. Its mission is to see that adults with developmental neuro-diversity reach their full potential and play a full role in society.

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.

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 Society
website: www.encephalitis.info

Aims to improve the quality of life for all people affected directly and indirectly by encephalitis.

Encephalitis Support Group
website: www.dailystrength.org/group/encephalitis

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

Epilepsy Society
website: www.epilepsysociety.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.

Guillain-Barr 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 Reeducation
website:   www.headinjuryreeducation.org.uk

Supports people with brain injury, their families and carers and concerned professionals. Campaigns for improved statutory services for people with brain injury.

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.lincolnshirepostpolio.org.uk

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.

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.

Migraine Action
website: www.migraine.org.uk

Aims to raise awareness of migraine, support research, and offers advice and information to migraineurs about the latest developments and treatments available.

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.

MSA Trust
website: www.msatrust.org.uk

The official support group for sufferers from Multiple System Atrophy (MSA).

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 Centre for Young People with Epilepsy (NCYPE)
website: www.ncype.org.uk

NCYPE is a national charity for children and young people aged 5 to 25 with epilepsy and other neurological conditions. It offers training and support for professionals, parents and young people through its Childhood Epilepsy Information Service.

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.

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.

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.

NeuroSupport
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.

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.

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.

Samantha Dickson Brain Tumour Trust
website: www.sdrt.co.uk

Samantha Dickson Brain Tumour Trust funds scientific and clinical research into childhood and adult brain tumours, and offers support and information to patients and their carers.

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.

SHINE (spina bifida / hydrocephalus)
website: www.shinecharity.org.uk

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 (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.

Spinal Injuries Association
website: www.spinal.co.uk

The Spinal Injuries Association (SIA) is the leading national charity for spinal cord injured people. It is unique in that it is a user led organisation with all its Trustees being spinal cord injured themselves.

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.

Sue Ryder Care
website: www.sueryder.org.uk

Provides neurological care centres.

Tourettes Action 
website: www.tourettes-action.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.

Transverse Myelitis Association
website: www.myelitis.org

The Transverse Myelitis Association facilitates support and networking opportunities amongst families; provides educational information; functions as a clearing house for articles and research literature; and investigates, advocates for and supports research and innovative treatment efforts.

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

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