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We are excited to share with you a survey containing questions to help researchers better understand the impact of FSHD on patients and caregivers. The survey was developed collaboratively by […]
Our 2015-2016YTD Donor Impact Report is out! We urge you to read it to appreciate the incredible impact your support has had, and will continue to have into the future. […]
The FSH Society’s 2016 Patient Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM) at the Westin Copley Place Hotel in Boston, Massachusetts. […]
Cambridge, Massachusetts-based Acceleron Pharma, Inc., is now recruiting adults with FSH muscular dystrophy for a Phase 2 clinical trial of ACE-083. The initial trial site is located in St. Louis, […]
Ellen Feldman, filmmaker, created this documentary about a woman she met who has FSH muscular dystrophy. “Katy Kat in the Hat is a story about a woman who defies all […]
