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.
About current support groups
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.
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.
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