The Dystonia Advocacy Network (DAN) is a grassroots organization that brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community.
The DAN welcomes and represents individuals with all forms of dystonia, and is led by the following dystonia organizations:
- Benign Essential Blepharospasm Research Foundation (BEBRF)
- Dysphonia International (DI)
- Dystonia Medical Research Foundation (DMRF)
- National Spasmodic Torticollis Association (NSTA)
Dystonia advocates develop relationships with their legislative leaders to help them understand the challenges of those living with dystonia. The DAN continuously works to adopt and advance a legislative agenda which raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves research forward. We thank the DMRF for providing staff support to the Dystonia Advocacy Network.
For more information please visit the website of the Dystonia Advocacy Coalition
Your voice is needed to advocate the needs of the Dystonia community. Become involved today!
The 2026 Advocacy Day will be held on Thursday, March 12, 2026 in Washington DC. If you are interested in becoming an active dystonia advocate, please register using the link below.