Advocacy

It is crucial that FSHD voices are heard.

By engaging with elected officials, regulators, and government offices, we can make a big difference in getting treatments to families faster. Using these connections, we can spread the word about FSHD, find funding, work together with others, and make the approval process faster. This will help remove obstacles in developing new medicines.

Read on to learn more about how the FSHD Society is leading advocacy efforts in three major areas:

Legislative Advocacy FDA / Regulatory Advocacy Payor System (Insurance) Advocacy

Want to get involved now?

Share your experience with FSHD to help drive awareness.

Questions, connections, or big ideas? Please reach out to: Anna Gilmore, Sr. Director of Advocacy & Education: Anna.Gilmore@FSHDSociety.org