For Researchers

Your trusted research partner

The FSHD Society is the world’s largest FSHD patient advocacy organization focused on research. For over 30 years, we have built strong relationships with the global FSHD research community and earned recognition as a trusted research leader and partner.

We aim to fill research gaps and advance strategic programs to improve understanding of FSHD, drive therapy development, and ensure patients can access and afford approved treatments. To achieve this, we use patient-centered approaches and collaborate with researchers worldwide across multiple disciplines.

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Explore resources and support

We’re happy to share your study recruitment materials with our community. Please use the below form to submit all relevant details and desired timeline.

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International Research Congress

The premier annual scientific meeting for FSHD researchers globally

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Grant Opportunities

Pilot grants to support basic, translational, and clinical research projects in FSHD

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Real World Data

Register for the BetterLife FSHD Research Gateway to unlock and access the lived experience of FSHD in real time. Explore and request real world data (RWD) from BetterLife FSHD – the Society’s innovative, new patient registry.

Leverage BetterLife FSHD and the Society’s contact database to recruit FSHD patients and families to your research study or submit a research collaboration inquiry. Learn more about the BetterLife FSHD Research Gateway.

Access Comprehensive Clinical Data

FOCUS, the FSHD Open Collaborative Unified System, offers access to a centralized FSHD clinical data warehouse including:

Patient Phenotype Analyses
Historical Control Data
Endpoint Optimization Insights
Treatment Outcome Patterns

FOCUS enables researchers to learn from previous studies to design better trials, reduce development timelines, and ultimately bring life-changing therapies to patients faster. The initiative begins with a generous data contribution from Fulcrum Therapeutics, whose losmapimod trial data will continue to inform future research, ensuring that the efforts and participation of patients continue to advance scientific discovery.