The Dystonia Society was first established by a small group of people who had various forms of dystonia, in 1983. Its initial aims were to provide mutual support for those affected by dystonia, and to raise awareness of the condition, particularly among the medical profession, through education and the promotion of research. It first became a registered charity in 1984, and its principal aims and objectives have remained the same throughout the past twenty years.

As the Society’s membership has grown, individuals have come together locally around the UK to establish local support groups and contacts providing opportunities for people to meet, share experiences, provide mutual encouragement and support. Many branch meetings have speakers on various aspects of dystonia, its treatment, and related issues such as access to services, employment issues, benefits and mobility.

Through the central office, there is access to information about all aspects of dystonia and related issues, and a telephone support service. In addition, individual members around the UK offer to act as ‘local contacts’, offering telephone support to people who may be experiencing difficulties in coping with their dystonia.

Camelford House
89 Albert Embankment
London
SE1 7TP
United Kingdom

Tel / Fax: 0845 458 6211
Email: info@dystonia.org.uk

Founded in 1976, the Dystonia Medical Research Foundation (DMRF) is a non-profit organization dedicated to serving all people with dystonia and their families. Since its inception, the DMRF has grown from a small family-based foundation into a dynamic membership-driven organization of approximately 38,000 persons, led by a Board of Directors and network of volunteers with personal connections to dystonia.

The mission of the DMRF is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.

The DMRF is governed by a volunteer Board of Directors led by the President. Led by the Scientific Director, the Medical and Scientific Advisory Council is comprised of pre-eminent scientists in multiple disciplines that include microbiology, genetics, brain circuitry, and epidemiology.

The Volunteer Network was established 1993, serving as a local conduit for support, awareness, and fundraising. The country is divided into seven regions served by volunteer Regional Coordinators who work with the local support groups and contacts to and the leadership appointees in the areas of Awareness, Advocacy, Development, Medical Education, and Children's programming.

Dystonia Medical Research FoundationNational Headquarters
One East Wacker Drive
Suite 2430
Chicago
Illinois 60601-1905
USA

Tel: 312-755-0198
Fax: 312-803-0138
Email: dystonia@dystonia-foundation.org

Dystonia advocacy at the European level.

EDF Secretariat
69 East King Street
Helensburgh
G84 7RE
United Kingdom

Tel / Fax: +44 1436 678 799
Email:alistair@newton1.co.uk

The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH). The NIH, located in Bethesda, Maryland, is an agency of the Public Health Service within the U.S. Department of Health and Human Services. NINDS has occupied a central position in the world of neuroscience for 50 years.

The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, every segment of society, and people all over the world. To accomplish this goal the NINDS supports and conducts research, both basic and clinical, on the normal and diseased nervous system, fosters the training of investigators in the basic and clinical neurosciences, and seeks better understanding, diagnosis, treatment, and prevention of neurological disorders.

For health or medical questions and general information:

NIH Neurological Institute
P.O. Box 5801
Bethesda
MD 20824
USA

Quicklinks to NINDS information pages:

• Dystonias
• Parkinson's disease
• Tremor