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.Read DAC's position paper for 2007 here.
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 at 800-377- (DYST) 3978 or email at dystonia@dystonia-foundation.org
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