Dystonia Advocacy Network

Dystonia organizations have united to form the Dystonia Advocacy Network (DAN). The purpose of this group is to represent the entire dystonia patient community in the United States on legislative matters such as greater research funding, access to treatments, and non-genetic discrimination legislation.

Previously, each organization represented its own legislative advocacy goals separately to our federal representatives. Progress was being made, but it became obvious that if the various dystonia patient organizations pooled their collective resources on this important issue much more could be accomplished.

The member organizations of DAN currently include:
  • Benign Essential Blepharospasm Foundation
  • DySTonia, Inc.
  • Dystonia Medical Research Foundation
  • National Spasmodic Dysphonia Association
  • National Spasmodic Torticollis Association

For more information about how you can participate in advocacy and the Dystonia Advocacy Network contact the DMRF's Grassroots Coordinator Dane Christiansen at 800-377- (DYST) 3978 or email at dchristiansen@dystonia-foundation.org


 

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