World FSHD Alliance

The purpose of World FSHD Alliance is to connect and activate the FSHD community globally in order to build a worldwide community of activists, empower patients, and advance our shared mission of accelerating the development of therapies.

This website is hosted by the FSHD Society on behalf of the World FSHD Alliance.

Meet the World FSHD Alliance Leaders

This global alliance was established because together, by sharing resources, strategy, and “speaking in one voice,” we can accomplish much more in education, support, and advocacy. Just as importantly, FSHD clinical trials will be international in scope. Coordinating our messages and outreach efforts will result in more timely, cost-effective ways to engage with industry around drug development, clinical trials, regulatory approval, and patients’ access to therapies.

World FSHD Alliance Members

The Americas

Europe & UK

Africa, Asia, Middle East & Oceania