Dystonia Organizations and Support Groups
Apurva Zawar, PT, DPT – BeyondRehab Cervical Dystonia Care Program
The program comprises an integrated approach to treat a wide range of functional and non-motor signs and symptoms to help patients achieve their goals and regain control of their life. Their comprehensive approach includes education, self-management techniques, neuroplastic training exercises, sensory motor training, and task-specific training. Their experienced and compassionate physical therapists work with you to create an individualized program tailored to your specific needs and goals.
Action for Dystonia, Diagnosis, Education and Research (ADDER)
21 Liddell Terrace
Bensham, Gateshead, NE8 1YN United Kingdom
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.
La Bauche – 43320 Vergezac, Francc
Phone: 09 71 59 14 70
AMADYS fights to spread dystonia awareness, reduce diagnostic wandering, and promote appropriate and earlier care through its website, brochures, an annual medical symposium and other events for the general public. They also develop relationships with the medical profession through the Scientific Committee, an integral part of the Association, and ensures permanent contact with CHUs and Treatment Centers.
Bachmann-Strauss Dystonia & Parkinson Foundation
Fred French Building
551 Fifth Avenue at 45th Street, Suite 520
New York, NY 10176
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
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
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
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.
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.
Square de Meeus 37 – 4th Floor
Brussels, 1000 Belgium
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.
33 Larkfield Grove
Harold’s Cross, Dublin 6W Ireland
Phone: 00 353 (01) 4922514
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
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
Dystonia Network of Australia
3/87 West Street
Balgowlah NSW 2093
Phone: +61 403 995 186
The mission of the Dystonia Network of Australia is to provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers, to increase community awareness of the condition, and to fund seminars and assist with research into dystonia.
International Parkinson and Movement Disorder Society
555 East Wells Street, Suite 1100
Milwaukee, WI 53202
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
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
National Spasmodic Dysphonia Association (NSDA)
300 Park Boulevard, Suite 415
Itasca, IL 60143
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
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.
New Zealand Dystonia Patient Network
PO Box 34 259, Birkenhead, Auckland 0746 New Zealand
Phone: 64 6 364 7618
The Mission of the New Zealand Dystonia Patient Network is to support dystonia patients with information, advice about living with dystonia and networking opportunities, to increase awareness about dystonia – both among the medical community and the general public, and encourage and facilitate research, with the aim of seeking better treatments, prevention, a cure.
NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Phone: 301-496-5751; 800-352-9424
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.
The Dystonia Society UK
89 Albert Embankment, 2nd Floor
Vauxhall London, SE1 7TP United Kingdom
Phone: 084-545-86211; 800-084-545-86322
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
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
Phone: 09 309 7749
Freephone: 0508 BRAINS (272 467)
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
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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