Organizations that Provide Information and Support

Benign Essential Belpharospasm Research Foundation Inc. Undertakes, promotes, develops and carries on the search for the cause and a cure for benign essential blepharospasm and other related disorders and infirmities of the facial musculature.
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Dystonia Medical Research Foundation (DMRF) Founded in 1976, the mission of the Dystonia Medical Research Foundation is three-fold: to advance research for more effective treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.
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International Essential Tremor Foundation A worldwide support and information resource for people diagnosed with essential tremor.
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National Spasmodic Dysphonia Association The organization provides support to Spasmodic Dysphonia patients through formal support groups, activities, and periodic newsletters. NSDA is dedicated to research, awareness, and support.
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National Organization for Rare Disorders (NORD) A unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families–as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities–rely on NORD’s assistance and leadership. NORD is a charity and continues its mission through the kindness and generosity of its donors.
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The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. A non-profit organization that supports patients, family members, researchers, clinicians and volunteers working in partnership to find better medical treatments and a cure for dystonia and Parkinson’s disease.
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The Dystonia Society The Dystonia Society is a UK-wide charity providing support, advice and information for anyone affected by the neurological movement disorder known as dystonia.
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Diagnosis Dystonia Diagnosis Dystonia takes you on a personal and educational journey full of valuable information for those newly diagnosed, as well as those who have been living with dystonia for years. Tom’s perspective as a long time dystonia patient is invaluable, offering coping skills, healthy living strategies, and treatment options. He also provides practical information for emotionally adjusting to the diagnosis and subsequent lifestyle changes, and how to live in the world with something “different” Testimonials from other patients provide additional prospective. >>  visit website