FSHD University: The Voice of the Patient: How Your Data and Experiences Drive Research Forward

Thursday, August 6 at 1:00 pm ET

Presenter: Kayleigh Worek, MS, FSHD Society

This session will highlight how patient registries, surveys, and natural history studies contribute to advancing FSHD research and shaping healthcare policy. Participants will learn how real-world data and lived experiences play a critical role in informing drug development, improving care, and driving meaningful progress for the FSHD community.