Patient Support and Advocacy Groups
There are many ways that you can help in the mission of the Dystonia Coalition. You may join one of our contact registries, participate in clinical studies, or join in one of the many activities of our patient advocacy groups. More information about each is described in this section.
There are several patient advocacy groups for dystonia. Each one has a different organization and focus. However, all are dedicated to helping patients and their families learn more about dystonia, link up with expert physicians and other providers, and encourage research to find better treatments and a cure.
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Action for Dystonia, Diagnosis, Education and Research (ADDER) ADDER’s mission is 1) to advance the education of the public in relation to the sickness and distress caused by the neurological conditions known as dystonia; 2) to promote the treatment of people with dystonia and other related movement disorders; 3) to offer support and welfare to patients, their carers and families; 4) to promote awareness and encourage research amongst the medical profession of the neurological conditions known as dystonia. |
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American Dystonia Society, Inc (ADS) American Dystonia Society (ADS) is dedicated to advancing Dystonia research, promoting patient advocacy, and increasing public awareness of this debilitating disease. Our top priority is to maximize delivery of donations to fund Dystonia Research in order to realize a cure and develop more effective diagnosis/medication/treatment protocols for Dystonia. ADS is dedicated to improving the quality of life for a person living with Dystonia. |
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The Bachmann-Strauss Dystonia and Parkinson Foundation (BSDPF) The Bachmann-Strauss Dystonia and Parkinson Foundation was established in 1995 to find better treatments and cures for the movement disorders dystonia and Parkinson's disease and to provide medical and patient information. |
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Beat Dystonia BEAT DYSTONIA will continue to create international awareness via print, speeches and press, raise money for research, advocate for patients, refer patients to specialists and will do all with minimal overhead. |
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Benign Essential Blepharospasm Research Foundation (BEBRF) The mission of the Benign Essential Blepharospasm Research Foundation, Inc. is to fund and promote medical research in the search for the cause and cure of blepharospasm, Meige, 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. |
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Cure Dystonia Now (CDN) Cure Dystonia Now is a non-profit 501(c)(3) charitable foundation committed to advancing research for more and/or improved treatments, and ultimately a cure, for Dystonia. |
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ST/Dystonia The mission of ST/Dystonia is helping people find a faster diagnosis and more effective treatment; thus empowering them to achieve a higher quality of life. |
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Dystonia Europe Dystonia Europe is a union of 18 national patient advocacy groups from 16 European countries, which support people living with any form of dystonia. Our aim is to work at the pan-European level to give added value to the work of our member groups. To achieve this, Dystonia Europe also works in partnership with other organisations and individuals, and with the medical profession, to stimulate dystonia research and awareness and to inform and influence the decisions of European policymakers in generic areas affecting neurological patients, particularly those living with dystonia. |
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Dystonia Ireland The mission statement 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, offer support and information to all people with dystonia and their families nationwide. |
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Dystonia Medical Research Foundation (DMRF) 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. |
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Dystonia Medical Research Foundation Canada (DMRFC) The mission of DMRFC 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. |
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The Dystonia Society (TDS) The Dystonia Society is a charity in the United Kingdom providing support, advice and information for anyone affected by dystonia. We aim to ensure that everyone affected has access to the most appropriate treatment and support to achieve the best possible quality of life. |
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Dystonie-Québec info@dystonie-qc.org Our mission is to provide support to French speakers, to find a cure for the disease due to efforts in the areas of research, education, support services and to provide advocacy for those affected. Notre mission est d’apporter un appui francophone, pour trouver un remède à la maladie grâce aux efforts consentis dans les secteurs de la recherche, de l’éducation, des services de soutien et de la défense des intérêts des personnes atteintes. |
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National Spasmodic Dysphonia Association (NSDA) The mission of the National Spasmodic Dysphonia Association 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 by spasmodic dysphonia. The NSDA is the only organization dedicated solely to the SD community. |
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The National Spasmodic Torticollis Association (NSTA) The mission of the National Spasmodic Torticollis Association (NSTA) is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure. |
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Tyler's Hope for a Dystonia Cure 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. We are inspired by the fearless energy, courage and love of life exemplified daily by our namesake, his sister and all those affected by Dystonia. |
