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Global stakeholders are meeting at FSHD Society conferences The FSHD Society is holding back-to-back meetings this month in Orlando, Florida, to convene patients, families, researchers, clinicians, advocacy leaders, industry scientists,… Read More »
We are convening the world this month in Orlando, Florida
Collaborating to collect clinical trial data
FSHD Society and Critical Path Institute will aggregate data in C-Path’s Rare Diseases Cures Accelerator-Data and Analytics Platform The FSHD Society announced that it has partnered with Critical Path Institute… Read More »
Applying AI to FSHD research
Using Artificial Intelligence to Analyze FSHD Data The FSHD Society announced that it is launching a collaboration involving the FSHD Clinical Trial Research Network (CTRN) and BullFrogAI, an innovator in… Read More »
ACT to improve quality of life
by Kent Drescher, PhD, Bay Area Chapter Co-Director I’ve had FSHD symptoms for over 50 years. It seems like I’ve spent much of that time waiting. Waiting for treatment. Waiting… Read More »
MOVE needs you!
To the FSHD community, we’re sharing this invitation from Drs. Statland and Tawil to join the MOVE study. It is open to individuals with FSHD of all ages residing in… Read More »