Join BetterLife FSHD Today!

Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.

FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.

There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
You’re invited! Mobility impact study
Nils Hakansson (he also goes by Alex) and is a professor in the College of Engineering at Wichita State University. He has FSHD and is working on projects to help improve accessibility for people with disabilities. He is currently working with a team of professors (who also have disabilities) on a project that will help…
The fate of the Fulcrum Phase 3 data
This invaluable data is coming to the FSHD Society by Lucienne Ronco, PhD, FSHD Society When a clinical trial fails, what happens to the data? It may include hundreds of thousands of measurements—blood chemistry, images, performances on physical tests, answers…
Upcoming Events
Featured
Feeling Fit with FSHD – A chat with Lonwabo Nene
Zoom Virtual Meeting , United StatesFeeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Rescheduled from January 23. We are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have...
Young Adults – Art and Journaling
Zoom Virtual Meeting , United StatesYoung Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores...
Parents’ Roundtable – Breathing issues
Zoom Virtual Meeting , United StatesParents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Children with early-onset FSHD are at higher risk for respiratory insufficiency. A bad cold can quickly lead to life-threatening complications. We'll be discussing what parents need to know about managing breathing issues and preventing serious outcomes. Join us...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.