The FSH 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:

  • FSH Society publications including: FSHD Advocate magazine (scroll down to fill out the subscription form), and Brochures & Resources.
  • The Society’s annual International Research Consortium meeting (held as a satellite meeting of the annual meeting of the American Society of Human Genetics).
  • 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.

The FSH Society also provides Peer-to-Peer Support by matching individuals to other patients in similar disease stages and life situations, and answers your inquiries for information and help with diagnosis, genetic testing, treatments, referrals to care providers, information on clinical studies and procedures, information on FSHD for your doctors, schools, and families, and ways to get involved through advocacy and fundraising.

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