Dystonia Advocacy Coalition
Dystonia organizations have united to form the
Dystonia Advocacy Coalition (DAC). 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 DAC 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 Coalition contact the DMRF's Grassroots Coordinator Dane Christiansen at 800-377- (DYST) 3978 or email at
dchristiansen@dystonia-foundation.org
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