Advocacy

The National Spasmodic Dysphonia Association is a proud member of the Dystonia Advocacy Network (DAN), a grassroots advocacy network that brings together dystonia-related patient groups to speak out with a single, powerful voice on legislative and public policy issues that impact dystonia patients.

The DAN was established in 2007 in order to leverage our resources for maximum effect in the legislature. No matter what type of dystonia you have, the DAN ensures that your voice will work in concert with other dystonia advocates on legislative initiatives which benefit all dystonia patients. Advocactes can have their voice heard on Capitol Hill!

The DAN welcomes and represents individuals with all forms of dystonia, and is lead by the following dystonia organizations:

  • Benign Essential Blepharospasm Research Foundation (BEBRF)
  • Dystonia Medical Research Foundation (DMRF)
  • National Spasmodic Dysphonia Association (NSDA)
  • National Spasmodic Torticollis Association (NSTA)
  • ST/Dystonia, Inc.

DAN Logo

The DAN continuously works to adopt and advance a legislative agenda that raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves publicly-funded research forward. Some of the major accomplishments the DAN has been involved with include:

  • Adding dystonia to the list of approved disorders to be funded by the Department of Defense research program;

  • Expansion of the dystonia research portfolio at the National Institutes of Health;

  • Establishing a follow-on biologics approval pathway at the Food and Drug Administration that includes strict patient safety standards;

  • Passing of the Genetic Information Nondiscrimination Act.

Become involved today. Log on to the Dystonia Advocacy Network website for more information.