When a newly diagnosed individual contacts the FSHD society, they can find patient education and support and a broad spectrum of research initiatives. The FSHD Society wanted a unified database of individuals with FSHD who were willing to participate in research initiatives. PACT, Patients Accelerating Clinical Trials, is a way to participate in all types of research, such as surveys, volunteering for a clinical trial, or joining the upcoming PACT FSHD Registry.
Does your type of MD have a registry similar to the PACT?