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
Understanding your FSHD
To be able to take charge, you need to listen to your body by Lonwabo Nene, South Africa “I don’t know, but my right arm feels loose. In fact, my entire right side feels kind of loose. But at the same time – tight.” That was the first time I actually tried to describe the…
Vita Therapeutics’ cell-based therapy update
The company switches up its strategy and plans to develop muscle stem cells that evade the immune system by June Kinoshita, FSHD Society Hot off the press is this news that Vita Therapeutics shared at the Greater Philadelphia chapter meeting…
Upcoming Events
Featured
Early-Onset Parent Roundtable – Planning for FSHD Connect
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT As we plan the 2024 FSHD Connect conference--the largest gathering for patients, families, clinicians, and researchers--we want to provide activities and spaces for kids and teens. Join us to learn more about FSHD Connect and help us brainstorm fun and...
Finding reliable health information on the Internet, with Tina Griffin
Zoom Web Conference , United StatesFinding reliable health information on the Internet, with Tina Griffin 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT Most of us turn to “Dr. Google” to find medical and health information, but how do we know the information is trustworthy? When our health...
FSHD Radio: Straight Talk with Tim Hollenback
Facebook and YouTubeOn the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen...
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.