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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 »
Collaborating to collect clinical trial data
Extraordinary Measures – Updating the standard of care for FSHD
by June Kinoshita, Director of Research and Patient Engagement Making sure that every person with FSH muscular dystrophy gets the best possible medical care is a high priority for us…. Read More »
Extraordinary Measures – Understanding the socioeconomic impact of FSHD
An aspect that is often overlooked during drug development is a cost-benefit analysis of a therapeutic treatment. Insurance companies often determine the level of coverage they are willing to provide… Read More »
Extraordinary measures – Educating doctors
by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally… Read More »
Extraordinary Measures – Many shots on goal
by Jamshid Arjomand, Chief Science Officer With a dozen or more potential FSHD therapies in the drug development pipeline, why is the FSHD Society continuing to invest substantial funds− a… Read More »