News & Updates

Hope starts with information.

Becoming a Treatment-Ready FSHD Community: Key Takeaways from the World FSHD Alliance Skill Share

How can the global FSHD community prepare for the arrival of the first therapies? This was the central question explored during the latest quarterly skill

October 28, 2026

New Survey for the FSHD Community: Shaping Future Care and Support

Attention Patient Advocate Leaders:You are invited to participate in a study on Advance Care Planning and palliative care in FSHD. This study is conducted by

September 25, 2026

FSHD Society University Recap: Project Mercury’s Global Impact and the Road Ahead

In a recent FSHD Society University webinar, Project Mercury Chair Emma Weatherly reflected on three years of global collaboration dedicated to preparing the FSHD community

August 18, 2026