Comment from FSHD Society
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Summary: The FSHD Society, an advocacy and research organization for facioscapulohumeral muscular dystrophy, supports the FDA's request for information on patient-focused drug development (PFDD) meetings. They highlight the success of their own "Voice of the Patient" report and urge the FDA to issue guidance on how rare disease organizations can continue to collect, update, and share patient preference data with the agency.
FSHD Society Public Comment on Docket (FDA-2026-N-3947) Impacts of Patient-Focused Drug Development Meetings; Establishment of a Public Docket; Request for Information and Comments