Upcoming Events

Learn. Support. Grow.

Knowledge empowers action, and in the FSHD community, it’s essential. Let us deepen our understanding, strengthen advocacy, and improve care.

Quarterly Skill Shares
virtual meetings and a welcoming space for FSHD families, advocates, clinicians, and researchers to stay informed about developments from all over the world.
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FSHD Europe
Upcoming Webinar for patient advocate leaders and patient organizations: "Anything & everything related to fundraising" on 25 March 7:30 pm CET
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FSHD Society: Upcoming Events
Learn about events that foster community, raise awareness, and support for FSHD families and initiatives from the FSHD Society.
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Share Your Thoughts in this Survey

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.

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