Why We Advocate

By galvanizing the Duchenne-patient community and bringing our unified voice to Washington, D.C., we have fostered relationships with elected officials who became unwavering Duchenne champions on Capitol Hill, 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 regulators 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 raise our voices in Washington, DC every year.