Across the world, FSHD families, advocates, and researchers are driving change together. This page highlights the initiatives that bring our community to life, showcasing the passion, creativity, and commitment that fuel our shared journey.
Explore how members are raising awareness, advancing research, and building support systems that make a difference.
A global day of awareness and unity. Discover the toolkit and see how communities around the world are drawing attention to FSHD on this global day of recognition.
A bold initiative driving strategic alignment across the FSHD ecosystem. Learn about how this project is shaping the future.
Your experiences, insights, and ideas help guide our shared journey. By taking part, you’ll help us understand how current initiatives are serving FSHD families and professionals, identify areas where more support is needed, set shared priorities for the next 12–18 months, and spark new ideas for collaboration and innovation.
We welcome responses from people living with FSHD, patient representatives, clinicians, and researchers involved in care or advocacy.
Our Quarterly Skill Share sessions are dynamic, global forums for learning and collaboration. They bring together patient leaders, clinicians, and advocates to exchange practical skills, share best practices, and align strategies across regions. Open to participants worldwide, these sessions ensure that knowledge flows freely and every member of the FSHD community is empowered to drive progress.