Landmark report captures compelling testimony by patients and family members about the severity of disease symptoms and urgent need for treatment LEXINGTON, MASS. (PRWEB) NOVEMBER 12, 2020 The FSHD Society has… Read More »
FSHD Society releases Voice of the Patient Report
The remarkable origins of FSHD research in America
by Allison Calder, Salt Lake City, Utah Did you know the first grant ever paid out by the United States National Institutes of Health (NIH) was awarded to study FSHD?… Read More »
Feeling the urgency of NOW. Time = Lives
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… Read More »
The community’s role in accelerating therapies
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,… Read More »
A success for the virtual 2020 International Research Congress
by Jamshid Arjomand, PhD, Chief Science Officer, FSHD Society Our original plan for 2020 was to host the International Research Congress (IRC) in Washington, DC, in proximity to the FDA… Read More »