On June 29, 2020, the FSHD Society convened the Voice of the Patient Forum, our community’s externally led patient-focused drug development (EL-PFDD) meeting to educate the FDA and other stakeholders […]
Voice of the Patient Report
Helen Younger Memorial Fund
[…] about raising funds to speed a cure for the estimated one million people affected by FSHD Muscular Dystrophy. Many of you responded with generous contributions and I am pleased to […]
Going Digital
[…] and research – opportunities to volunteer for vitally important studies needed to develop treatments for FSHD FSHD Connect Classroom – an immersion in the latest medical and drug development advances […]
NE Florida Chapter
NE Florida Chapter Thank you for visiting the NE Florida Chapter of the FSHD Society which officially launched in March 2021. We are here to build a local community of […]
Sleep and pain, the hidden connection
In this presentation, Heloise Hoffmann shares her study focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To […]