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by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to […]
Last year, the FSHD Society launched an aggressive initiative to accelerate therapeutic development in FSHD. Because of our donors’ commitment and investment, we hosted the first Industry Collaborative Workshop for […]
by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of […]
By Elizabeth W, Los Angeles, California There is a lot of fear when you live with a progressive disease like FSH muscular dystrophy. Your mind is constantly circling a sea […]
In our webinar on “Accelerating Therapy Development: The Patient Community Role,” Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics, discusses the many ways in which your efforts, […]
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