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by Tom Seaman, BS, CPC

Dystonia Organizations and Support Groups

Action for Dystonia, Diagnosis, Education and Research (ADDER)

21 Liddell Terrace

Bensham, Gateshead, NE8 1YN  United Kingdom

Phone: 0191-477-7700

Email: [email protected]

Website: www.actionfordystonia.co.uk

The mission of ADDER is to advance education to the public about dystonia; to promote the treatment of people with dystonia and other related movement disorders; to offer support and welfare to patients, their caregivers, and families; to promote dystonia awareness and encourage research among the medical profession.


Bachmann-Strauss Dystonia & Parkinson Foundation

Fred French Building

551 Fifth Avenue at 45th Street, Suite 520

New York, NY  10176

Phone: 212-682-9900

Email: [email protected]

Website: www.dystonia-parkinsons.org

The Bachmann-Strauss Dystonia and Parkinson Foundation was established in 1995 to find better treatments and cures for dystonia and Parkinson's disease, and to provide medical and patient information.


Benign Essential Blepharospasm Research Foundation (BEBRF)

637 North 7th Street, Suite 102

PO Box 12468

Beaumont, TX  77726-2468 

Phone: 409-832-0788

Email: [email protected]

Website: www.blepharospasm.org

The mission of the Benign Essential Blepharospasm Research Foundation (BEBRF) is to fund and promote medical research in the search for the cause and cure of blepharospasm, Meige’s Syndrome, and other related disorders of the facial musculature; to provide support, education and referrals to persons with these disorders, and to disseminate information and serve as an authoritative resource to the medical community and the general public.


Canadian Movement Disorder Group

Website: www.cmdg.org

To support a network of movement disorder clinics across Canada to provide the appropriate facilities to treat patients with movement disorders, and to conduct clinical research trials in movement disorder patients.


Dystonia Advocacy Network (DAN)

1 East Wacker Drive, Suite 2810

Chicago, IL  60601

Website: www.dystonia-advocacy.org

DAN is a grassroots organization that brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community.


Dystonia Coalition

Website: www.rarediseasesnetwork.org/Dystonia

The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups that is working to advance the pace of clinical and translational research in the dystonias to find better treatments and a cure. Emory University in Atlanta, GA (Druid Hills, GA) serves as the Central Coordinating Center for the Dystonia Coalition’s activities.


Dystonia Europe

Square de Meeus 37 - 4th Floor

Brussels, 1000 Belgium

Phone: 447-736-625450

Email: [email protected]

Website: www.dystonia-europe.org

Dystonia Europe was formed in 1993 as European Dystonia Federation, the European umbrella organization for national dystonia groups. The aims of Dystonia Europe are to provide an international platform at the European level to improve the lives of people with dystonia, stimulate research for more effective treatments, and to ultimately find a cure.


Dystonia Ireland

33 Larkfield Grove           

Harold’s Cross, Dublin 6W  Ireland

Phone: 00 353 (01) 4922514

Email: [email protected]

Website: www.dystonia.ie

The mission of Dystonia Ireland is to promote and encourage scientific research into the causes and treatments of dystonia, raise the level of awareness amongst the general public and the medical profession, and offer support and information to all people with dystonia and their families nationwide. 


Dystonia Medical Research Foundation (DMRF)

One East Wacker Drive, Suite 1730

Chicago, IL 60601-1905

Phone: 312-755-0198

Email: [email protected]

Website: www.dystonia-foundation.org

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.


Dystonia Medical Research Foundation Canada (DMRFC)

121 Richmond Street West, Suite 305

Toronto, Ontario M5H 2K1  Canada

Phone: 800-361-8061

Website: www.dystoniacanada.org


International Parkinson and Movement Disorder Society
555 East Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-276-2145
The International Parkinson and Movement Disorder Society (MDS) is a professional society of over 4,500 clinicians, scientists, and other healthcare professionals dedicated to improving the care of patients with movement disorders through education and research.


National Organization for Rare Diseases (NORD) - Connecticut Office

55 Kenosia Avenue

Danbury, CT 06810

Phone: 744-0100; 800-999-6673

Website: www.rarediseases.org

The National Organization for Rare Disorders (NORD), is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.


National Organization for Rare Diseases (NORD) - Washington Office

1779 Massachusetts Avenue, Suite 500

Washington, DC 20036

Phone: 202-588-5700

Website: www.rarediseases.org


National Spasmodic Dysphonia Association (NSDA)

300 Park Boulevard, Suite 415

Itasca, IL 60143

Phone: 800-795-6732

Email: [email protected]

Website: www.dysphonia.org

The mission of the NSDA is to advance medical research into the causes of and treatments for spasmodic dysphonia, promote physician and public awareness of the disorder, and provide support to those affected. The NSDA is the only organization dedicated solely to the spasmodic dysphonia community.


National Spasmodic Torticollis Association (NSTA)

9920 Talbert Avenue

Fountain Valley, CA 92708

Phone: 714-622-5446; 800-487-8385

Email: [email protected]

Website: www.torticollis.org

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


NIH/National Institute of Neurological Disorders and Stroke

P.O. Box 5801

Bethesda, MD 20824

Phone: 301-496-5751; 800-352-9424

Website: www.ninds.nih.gov

The NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. It provides grants-in-aid to public and private institutions, and individuals in fields related to its areas of interest, including research projects, program projects, and research center grants. It operates a program of contracts for the funding of research and research support efforts, provides individual and institutional fellowships, conducts a diversified program of intramural and collaborative research in its own laboratories, branches, and clinics, and collects and disseminates research information related to neurological disorders.


ST/Dystonia, Inc.

P.O. Box 28

Mukwonago, WI 53149

Phone: 262-560-9534; 888-445-4588

Email: [email protected]

Website: www.spasmodictorticollis.org

The mission of ST/Dystonia is helping people find a faster diagnosis and effective treatments, empowering them to achieve a higher quality of life. They provide written and electronic resources to help people learn more about dystonia and better manage their disorder, as well as treatment advice from nationally recognized doctors.


The Dystonia Society UK

89 Albert Embankment, 2nd Floor

Vauxhall London, SE1 7TP  United Kingdom

Phone: 084-545-86211; 800-084-545-86322

Email: [email protected]

Website: www.dystonia.org.uk

The Dystonia Society is a charity in the United Kingdom providing support, advice and information for anyone affected by dystonia. Its aim is to ensure that everyone affected has access to the most appropriate treatments and support to achieve the best possible quality of life.


The Kurt B. Seydow Dystonia Foundation

229 Minnetonka Ave. S. PO Box 969

Wayzata, MN 55391-2093

Phone: (952) 474-7000

Toll-Free: (844) 876-3051

Fax: (952) 474-7003

Website: https://kbsdystonia.org/

The mission of The Kurt B. Seydow Dystonia Foundation is to promote education and awareness of Dystonia among the general public and medical community; to advance medical research to ultimately find a cure, and to support the Dystonia Community at large.


The Neurological Foundation of New Zealand

66 Grafton Road, Grafton

PO Box 110022, Auckland Hospital

Auckland 1148

Phone: 09 309 7749

Freephone: 0508 BRAINS (272 467)

Email: [email protected]

Website: www.neurological.org.nz

The Neurological Foundation is an independent body and charitable trust that raises funds to ensure this country’s top neuroscientists can continue leading edge research into neurological disorders. It's mission is "To alleviate suffering from diseases and disorders of the brain and nervous system through research and education."


Tyler's Hope for a Dystonia Cure

13351 Progress Blvd 

Alachua, FL  32615 

Phone: 386-462-5220

Email: [email protected]

Website: www.tylershope.org

Tyler's Hope for a dystonia cure was created to passionately pursue solutions and a cure to the pain and limitations caused by DYT1 dystonia (early-onset primary dystonia). While raising global awareness of this disease, it is committed to funding the research required to find a cure for dystonia and develop treatments while on this task.

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Quantity discount rates are available for support groups, doctor offices, health clinics, foundations, and associations.

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