Purpose of the Survey

This survey is designed to understand whether the strategic direction of the World FSHD Alliance meets the expectations and needs of its members. It also aims to identify priorities for the next 12 months and capture new ideas for collaboration and innovation.
We welcome responses from:
  • People living with FSHD
  • Patient representatives from national organizations and regional associations
  • Clinicians and researchers involved in FSHD care or science

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