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No one should ever face FSHD alone.
We work to connect patients, family and loved ones to others who understand firsthand what you’re going through. Whether you are looking for information, resources or just a shoulder to lean on, the FSHD Society gives you the support you need to keep hope within reach.
Join FSHD University
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
Find a Chapter Near You
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone. Our Chapter Program brings together the local community for education, connection, support, fundraising, and fun.
Online Communities
No one should have to walk the FSHD journey alone and there can be great strength in shared experiences. With this in mind, the FSHD Society, in partnership with amazing volunteer leaders from across the country - and across the globe! - has formed several groups that bring together patients, family members, and friends who are walking similar paths. The Gathering Place offers patients and families the opportunity to connect with others to share resources, emotional support, and a sense of community and connection.
Find the group that best fits where you are on your journey, tune in to our twice monthly podcast, or join the conversation online via social media.