Dystonia Organizations and Support Groups


La Bauche – 43320  Vergezac, Francc
Phone: 09 71 59 14 70
Email: secretariat.amadys@amadys.fr
Website: https://amadys.fr/
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.

Benign Essential Blepharospasm Research Foundation (BEBRF)

637 North 7th Street, Suite 102
PO Box 12468
Beaumont, TX  77726-2468
Phone: 409-832-0788
Email: bebrf@blepharospasm.org
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.

BeyondRehab Cervical Dystonia Care Program – Apurva Zawar, PT, DPT

Phone: 206-414-8610
Email: info@beyondrehab.health
Website: https://www.beyondrehab.health/cervical-dystonia
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.

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: https://dc.rarediseasesnetwork.org/
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: sec@dystonia-europe.org
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: info@dystonia.ie
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: dystonia@dystonia-foundation.org
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

Dystonia Network of Australia

3/87 West Street
Balgowlah NSW 2093
Phone: +61 403 995 186
Email: info@dystonia.org.au
Website: https://www.dystonia.org.au/
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.

Dystonia UK

89 Albert Embankment, 2nd Floor
Vauxhall London, SE1 7TP  United Kingdom
Phone: 084-545-86211; 800-084-545-86322
Email: angie@dystonia.org.uk
Website: www.dystonia.org.uk
Dystonia UK 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.

Encouragement Group for Cervical Dystonia Facilitated by Linda Furiate

Contact: Linda Furiate – Mentor, Encouragement Coach
Phone: 443-794-5087
Email: LMFuriate@gmail.com
Website: Cervical Dystonia | Creating A Positive Life
A monthly online (Zoom) support group for those of us living with cervical dystonia. An open discussion forum that will focus on the emotional and spiritual aspects of healing. The intention within the group is to explore our faith, philosophies, our strengths, desires, one’s astrology, and our mindset that may lead us toward greater physical and emotional well-being. Most meetings will be held the 3rd Wednesday of each month at 6:30 pm ET. Contact Linda to be added to the list to receive the Zoom link.

International Parkinson and Movement Disorder Society

555 East Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-276-2145
Email: info@movementdisorders.org
Website: www.movementdisorders.org
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: NSDA@dysphonia.org
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: NSTAmail@aol.com
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.

New Zealand Dystonia Patient Network

PO Box 34 259, Birkenhead, Auckland 0746 New Zealand
Phone: 64 6 364 7618
Email: info@dystonia.org.nz
Website: http://www.dystonia.org.nz/
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
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.

NYC Dystonia Support Group

This is a New York City based support group that welcomes all members of the dystonia community including supportive loved ones regardless of location. This group is primarily virtual with opportunities for occasional in-person meetings. This group offers social support, resource exchange, and community.
Support Group Leader: Margaux Galli – Margaux is a disability and mental health advocate who has lived with dystonia for over twenty years. She is passionate about social support and community engagement.
Email: margauxadvocacy@gmail.com

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: admin@neurological.org.nz
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: tylershope@intermed1.com
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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