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, ther FSHD Society gives you the support you need to keep hope within reach.
Join Our Community
Come join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for Facioscapulohumeral Muscular Dystrophy.
Join A Local Chapter
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.
Find A Support Group
If there isn’t a chapter near you, there may be a local support group. For upcoming chapter and local support group dates, visit the Events Calendar. Not one in your area? Contact the FSHD Society for help with outreach to patients in your community.
Online Communities
Online communities are a rich source of information and connection. Patients and families share resources, emotional support, and a sense of community and connection.