Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
We share the latest news, research, advocacy efforts, and community stories across these platforms:
Follow us wherever you prefer to stay up to date!
Our YouTube channel is your go-to resource for educational videos, expert webinars, event recordings, and personal stories from the FSHD community. Whether you missed a live event, want to catch an episode of FSHD Straight Talk , or would like to learn more about FSHD, you’ll find valuable content here.
Subscribe to Our ChannelOur official Discord server is a place to meet other members of the FSHD Community. Join the server to socialize and chat about anything. You can meet others with similar interests, talk FSHD research, or simply share memes. We have channels for Gen Z and Young Professionals, but all are welcome!
Join the ConversationThere are also Facebook groups you can join that are not affiliated with the FSHD Society. If you are interested in these groups, visit them on Facebook and request to join. Their administrator will take it from there. Please note that we do not monitor these groups and that you should talk to your care team when seeking medical advice.
Following us is just the beginning. Join the FSHD Society and be part of a community powering the path forward through connection, advocacy, and progress.
Join the FSHD Society