FSHD University – The Burden of FSHD

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT

The Economic Burden of FSHD

Presenters: June Kinoshita and Amanda Hill, FSHD Society

Living with FSHD comes with many hidden costs—not just physically and emotionally, but financially as well. Yet little is known about how the disease impacts healthcare spending, insurance coverage, and access to care in the United States. In this FSHD University webinar, former FSHD Society Director of Education and Research June Kinoshita and current Senior Director of Research Amanda Hill will share findings from two key studies: an analysis of a large U.S. medical claims database and insights from the TrueCost of FSHD and Voice of the Patient surveys. Join us to learn what these data reveal about the real-world cost of FSHD and how this knowledge can inform advocacy, insurance coverage, and future support for our community.