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 share meeting of the World FSHD Alliance, featuring Dr. Michelle Mellion, former leader of the FSHD program at Fulcrum Therapeutics and current Medical Advisor to the FSHD Society. The discussion […]
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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 Radboud University Medical Centre, the Netherlands, in collaboration with FSHD Global and FSHD Europe. Advance Care Planning is the process of thinking about and planning for your current and future […]
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 for future therapies. Spanning ten countries, Project Mercury has helped expand FSHD registries to more than 10,000 patients worldwide, strengthen clinical trial capacity, develop readiness toolkits and frameworks, and advance […]
One Collective Voice: Stories from World FSHD Day 2026
On June 20, World FSHD Day unites the entire FSHD community – individuals living with FSHD, their families, friends, and communities, and the research and clinical community – to celebrate resiliency and raise awareness about facioscapulohumeral muscular dystrophy (FSHD). The World FSHD Alliance supports this global day of awareness by helping organizations, leaders, and advocates […]