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BEBRF and the Dystonia Advocacy Network

Previously, various dystonia organizations competed for limited resources and the opportunity to influence lawmakers. It was concluded that the dystonia organizations want basically the same things, so we decided to join together in order to have more impact in the advocacy arena. The Dystonia Advocacy Network (DAN) was created with a mission of speaking with one voice for issues affecting dystonia patients and their families. Members of the DAN are Benign Essential Blepharospasm Research Foundation, Inc. (BEBRF), DySTonia, Inc., Dystonia Medical Research Foundation (DMRF), National Spasmodic Dystonia Association (NSDA), and National Spasmodic Torticollis Association (NSTA).

Advocacy volunteers representing all the groups involved in the DAN meet on a regular basis to share ideas and strategies for influencing Congress. Advocacy materials and training are provided to make it easier for patients to be good advocates.

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