Members

A.D.D.E.R. (Action for Dystonia, Diagnosis, Education and Research) International Coordinator, Ms Val Sharpe, Lead Rd, Greenside, Ryton, Tyne & Wear NE40 4JU.  Tel. 01901 4139500 valsharpe@btconnect.com www.dystonia.co.uk
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.

Ann Conroy Trust, The
33 Southam Road
Dunchurch
Rugby
Warwickshire
CV22 6NL
Tel. 01788 537676
enquiries@theannconroytrust.org.uk
http://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 syringomyela and related conditions.

Association for Spina Bifida and Hydrocephalus (ASBAH)
42 Park Road
Peterborough
PE1 2UQ
Tel. 01733 555988

info@asbah.org
http://www.asbah.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.

Ataxia UK 10 Winchester House Kennington Park Cranmer Road London SW9 6EJ Tel. 0207 582 91444 Helpline. 0845 6440606 enquiries@ataxia.org.uk http://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 IACR-Rothamsted Harpenden Herts AL5 2JQ Tel. 01582 760733 Fax. 01582 760162 atcharity@aol.com http://www.atsociety.org.uk
Aims to alleviate the distress of A-T through funding research, supporting families and raising awareness.

BASIC
(Brain and Spinal Injury Charity)
The Neurocare Centre
554 Eccles New Road
Salford
M5 5AP
Tel. 0161 707 6441
Fax. 0161 787 4558
Enquiries@basiccharity.org.uk
http://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 7 Winchester House Kennington Park Cranmer Road London SW9 6EJ Tel. 020 7793 5900 Fax. 020 7793 5939 Brain and Spine Helpline. 0808 808 1000 info@brainandspine.org.uk http://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 Polio Fellowship
Eagle Office Centre
The Runway
South Ruislip
Middx
HA4 6SE
Tel. 020 8842 1898
Fax. 020 8842 0555
info@britishpolio.org.uk
http://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.

Child Brain Injury Trust C/O Radcliffe Infirmary Woodstock Road Oxford OX2 6HE Tel. 01865 552467 Helpline. 0845 6014939 info@cbituk.org http://www.cbituk.org

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.

DANDA- Developmental Adult Neuro-Diversity Association
46 Westbere Road
London
NW2 3RU
Tel. 0207 435 7891
Chair: mary@pmcolley.freeserve.co.uk
Treasurer & Campaigns: adrian_whyatt_athome@yahoo.co.uk
http://www.danda.org.uk/

DANDA is the first national charity in the world specializing exclusively in all types of neurodiversity in adulthood, user-led or non user-led. Helps adults with developmental dyspraxia, dyslexia, Asperger’s syndrome, AD(H)D, dyscalculia and related conditions reach their full potential. Provides support, raises awareness.

Different Strokes 9 Canon Harnett Court Wolverton Mill Milton Keynes MK12 5NF Tel. 01908 313 501 Fax 01908 317 618 info@differentstrokes.co.uk http://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.

Dover District Carers' Support
10 Victoria Road
Deal
Kent
CT14 7AP
Tel. 01304 364637
support@carers-doverdistrict.org

Provides support and information to unpaid carers, including those with neurological conditions and ensures signposting to other relevant organisations.

Dystonia Society
89 Albert Embankment
London
SE1 7TP
Tel. 0845 458 6211
info@dystonia.org.uk
http://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 7b Saville Street Malton YO17 7LL Tel 01653 692583 Fax 01653 604369 mail@encephalitis.info http://www.encephalitis.info
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 New Anstey House Gate Way Drive Yeadon Leeds LS19 7XY Helpline number 0808 800 5050 Phone 0113 210 8800 Fax 0113 391 0300 info@epilepsy.org.uk http://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.

Headway - The Brain Injury Association
2 Tavistock Place
London
WC1H 9RA
Tel. 0207 841 0240
enquiries@headway.org.uk
http://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.

Huntington's Disease Association
Down Stream Building
1 London Bridge
London
SE1 9BG
Tel.020 7022 1950
info@hda.org.uk
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 P.O.Box 186 Leeds LS20 8WY Tel. 01943 871 852 sharon.jec@btconnect.com http://www.jointepilepsycouncil.org.uk
An umbrella organisation that exists to enable epilepsy organisations to work together for the benefit of people who have epilepsy.

Lincolnshire Post Polio Network P O Box 954 Lincoln LN5 5ER Tel. 01522 888601 info@lincolnshirepostpolio.org.uk www.lincolnshirepostpolio.org.uk
Run by and for people who have had polio and their families and friends. Produces newsletter and a website and on-line library with upwards of 100 catalogued articles, with regularly updated list of medical articles and other information. E-mail enquiries welcomed and answered.

Neurosupport
The Neurosupport Centre
Norton Street
Liverpool L3 8LR
Tel. 0151 298 2999
Fax 0151 298 2333
info@neurosupport.org.uk
www.neurosupport.org.uk

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 Mersey Neurological Charities Group.

The Migraine Trust
2nd Floor
55-56 Russell Square
London
WC1B 4HP
Tel. 020 7436 1336
info@migrainetrust.org
http://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 Association
PO Box 246
Northampton
NN1 2PR
Tel: 01604 250505
Fax: 01604 638289
info@mndassociation.org
http://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.

Multiple Sclerosis Society
Ms National Centre
372 Edgware Road
Cricklewood
London
NW2 6ND
Tel. 020 8438 0700
Fax 020 8438 0701
info@mssociety.org.uk
http://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 Spirella Building Bridge Road Letchworth Herts SG6 4ET Tel. 01462 476700 info@mstrust.org.uk http://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
7-11 Prescott Place
London
SW4 6BS
Tel. 0207 720 8055
Fax 0207 498 9670
info@muscular-dystrophy.org.uk
http://www.muscular-dystrophy.org.uk

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.

National ME Centre
DSC
Harold Wood Hospital
Romford
Essex
RM3 0AR
Tel. 01708 378050
nmecent@aol.com
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 DSC Harold Wood Hospital Romford Essex RM3 0AR Tel: 01708 386399 Fax: 01708 378032 tremorfoundation@aol.com 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.

NCYPE (National Centre for Young People with Epilepsy)
St Piers Lane
Lingfield
Surrey
RH7 6PW
Tel. 01342 832243
Fax 01342 834639
info@ncype.org.uk
http://www.ncype.org.uk

The National Centre for Young People with Epilepsy is the major provider of specialised care to young people with epilepsy in the UK. The charity works in partnership with Great Ormond Street for Children NHS Trust and The Institute of Child Health. The NCYPE is dedicated to providing an environment where children with epilepsy can live, learn and develop, no matter how severely they are affected by epilepsy.

Pain Concern,
PO Box 13256,
Haddington,
EH41 4YD.
Tel: 01620 822572
info@painconcern.org.uk
www.painconcern.org.uk

Information and support for pain sufferers, those who care for them and about them.

Parkinson’s Disease Society 215 Vauxhall Bridge Road London SW1V 1EJ Tel. 02079318080 info@parkinsons.org.uk http://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.

Primary Care Neurology Society                                                                                                                                      P-CNS Secretariat
c/o Innervate Ltd
117 Waterloo Road
London SE1 8UL

Tel: 020 7921 0002                                                                                                                                                             Fax: 020 7760 7193

info@p-cns.org.uk                                                                                                                                                           www.p-cns.org.uk

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.

The PSP Association The Old Rectory Wappenham Nr Towcester Northamptonshire NN12 8SQ Tel. 01327 860299 Fax 01327 861007 psp@pspeur.org http://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, particularly amongst relevant health professionals and amongst the general public at large, mainly in the UK. Fundraises to enable the above to take place.

Speakability 1 Royal Street London SE1 7LL Tel. 020 7261 9572 Fax 020 7261 9542 speakability@speakability.org.uk http://www.speakability.org.uk
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
Stroke House
240 City Road
London
EC1V 2PR
Tel: 020 7490 2686
info@stroke.org.uk
http://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
114-118 Southampton Row
London
WC1B 5AA
Tel: 020 7400 0440
Fax 020 7400 0411
info@suerydercare.org
http://www.suerydercare.org

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."

Tourette Syndrome (UK) Association Judith Kidd  (Chief Executive)      Southbank House Black Prince Road London SE1 7SJ Tel. 020 7793 2356                           Helpline  0845 458 1252 enquiries@tsa.org.uk http://www.tsa.org.uk
A Registered Charity dedicated to: providing support, educating, informing and campaigning, promoting medical research on behalf of all those affected by TS. National helpline, website forum with Dr online, research grants and maintains a list of UK specialists. Information packs, publications, video for hire, publicity. Holds National meeting for members and interested parties. Membership services include family networking - support throughout the UK and TSA advocacy. Regular quarterly news bulletins + newsletter.

Trigeminal Neuralgia Association UK PO Box 413 Bromley BR2 9XS Tel. 0208 462 9122 jan.bruten@tna.org.uk http://www.tna-uk.org.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
PO Box 12979
Barnt Green
Birmingham B45 5AN
Tel/Fax. 0121 445 6970

support@tuberous-sclerosis.org
http://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)
Royal Hospital for Neurodisability,
West Hill,
Putney,
London SW15 3SW
Tel. 020 87804500
ukabif@rhn.org.uk
http://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 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.