The FSHD Society acts as a clearinghouse for information on FSHD and on potential drugs and devices designed to alleviate its effects. It fosters communication among FSHD patients, their families and caregivers, charitable organizations, government agencies, industry, scientific researchers, and academic institutions.
In addition to the information provided on this website and across the Society’s social channels, there are three major mediums in which the Society educates the broader public about FSHD:
- FSHD Society publications including: FSHD Advocate magazine and free materials in our Patient Library.
- The Society’s annual International Research Congress.
- The FSHD Connect Conference (formerly the FSH Society International Researcher, Clinician and Patient Network Conference), held in even-numbered years at various locations around the U.S. and which attracts about 200 patients from across the country and around the world.
To learn more about FSHD, check out the resources below:
- Living with FSHD
- The FSHD Society is focused on educating and empowering patients and their families. Learn more here.
- The FSHD Blog: a resource for staying up to date on all things FSHD and FSHD Society
- The Event Calendar: A calendar of events for education webinars, conferences and local meetings.