The FSHD Society announced today that the U.S. Food and Drug Administration (FDA) has approved its application to hold an externally led Patient-Focused Drug Development (EL-PFDD) meeting on facioscapulohumeral muscular dystrophy. This “voice of the patient” meeting, a key component of the Society’s Therapeutic Accelerator initiative, has been scheduled for April 21, 2020, in College… Read More »
Patient-Focused Drug Development Meeting for FSHD
FSHD Society Announces 2020 Conferences
The nation’s capital will host the world’s premier conferences on facioscapulohumeral muscular dystrophy for all stakeholders. REGISTER HERE. The FSHD Society’s 27th annual International Research Congress (IRC) will be held on June 25-26, 2020, at the Washington Hilton in Washington, DC. It will be followed on June 27-28 by FSHD Connect, the Society’s biennial global… Read More »
FSHD Society signs agreement to expand CTRN
From PRWeb The FSHD Society announced today that it has signed a memorandum of understanding to enter into a three-year agreement to enable the expansion of the international facioscapulohumeral muscular dystrophy (FSHD) Clinical Trial Research Network (CTRN). FSHD is a hereditary muscle-damaging condition that affects an estimated one out of 8,000 people, or nearly one million men, women,… Read More »
What’s in a name?
We’re now the FSHD Society Discerning readers will notice that we have changed our name and logo to align with how the rest of the world abbreviates facioscapulohumeral muscular dystrophy. This is not simply an exercise in trendiness. When we were the FSH Society, we led the charge for using “FSHD,” providing a single, consistent… Read More »
Radio show: Meet Heather Green, forensic psychologist
Join radio host Tim Hollenback via Facebook Live on Thursday, August 29, at 9:00 PM EST for a conversation with the fascinating Heather Green. You can read her story here. A former singer, model, and interior designer, Heather embarked on a new career when her diagnosis with FSHD forced her to reassess her future. Childhood… Read More »