Why We Advocate

By bringing our unified voice to Washington, D.C. for two decades this community has fostered relationships with elected officials, creating Duchenne champions on Capitol Hill. Together we have passed banner legislation, ensured federal funding for Duchenne, and established collaborations with every federal agency that touches Duchenne.

As therapies have moved through development, we’ve told our personal stories to FDA and transformed those stories into quantifiable data. We have catalyzed research funding and built a regulatory infrastructure for rare disease products that has reshaped the therapeutic, care, and trial environment.

Explore the information below to learn more about why we raise our voices in Washington every year.