Visit the FSH Society Chapters directory to see if there is a chapter near you, or learn how to start a chapter in your area. To start a local support group (not a full-scale chapter), please contact the FSH Society. We can share best practices and help with outreach to patients in your area.
For upcoming chapter and local support group meeting dates, see the Event Calendar.
Find a Support Group Near You
California, San Diego/Orange County
Meets at various times during the year in and around San Diego and Orange County to socialize and work together on patient education and support, fundraising and advocacy. Check out the FSH Society So Cal Facebook page and contact Amy Bekier. Phone (619) 786-2644.
We have meetings in Miami and Tampa. We would like to expand to the Jacksonville area. If you are interested in helping to organize, please contact the FSH Society.
For patients in and around the state of Michigan. Members gather 3-4 times a year and have met in Ann Arbor, Detroit, and Grand Rapids. If you are interested, please contact Amy Tesolin-Gee.
Patients in the Minneapolis/St. Paul region are meeting around twice a year. If you are interested, please contact the FSH Society.
New York City and Long Island
Meets several times a year. For more information, please contact the FSH Society.
Meets ~3 times a year, with location rotating between Charlotte, Research Triangle Park, and Winston-Salem. If interested, please contact volunteer organizer Deborah Woolard.
Is not currently active, but if you would like to get a meeting going in the Portland area, we would love to hear from you. Please contact the FSH Society.
Southwest / Oklahoma
Meetings hosted by Tulsa-based FSH Society board member Jim Chin, for folks in Oklahoma, Texas, Arkansas, Kansas, Missouri. For updates, check out the FSH Society Southwest Facebook page. If interested in learning more, contact Jim Chin.
Planning to meet twice a year. If interested, please contact the FSH Society.
Meets several times a year. If you are interested in joining, please contact Brad and Patty Mauldin.
Western Washington FSH group
We have teamed up with a long-standing Seattle-based patient support group which meets on the fourth Saturday of every month. Details here. Visit their Meet-up page to join. If you are interested, please contact the FSH Society.
International FSHD and Muscle Disease organizations
- FSHD Champions, an international alliance supporting FSHD research
- FSHD Europe
- Amis FSHD (France)
- FSH-MD Support Group UK
- FSHD Italy
- FSHD Spain
- FSHD German Support Group of Deutsche Gesellschaft für Muskelkranke
- FSHD China
- FSHD Japan