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
Miami FSHD Family Day Talks
Here are the agenda, speaker biographies, and presentation materials from our Miami FSHD Family Day Conference, which was held on Saturday, February 23, 2019, at the beautiful Newman Alumni Center at the University of Miami in Coral Gables. Click on the talk titles to download the slides. Best practices in caring for FSHD • FSHD…
Big pharmas show growing interest in FSHD
By June Kinoshita, FSHD Society The pharmaceutical industry is showing a growing interest in developing therapies for facioscapulohumeral muscular dystrophy (FSHD), a rare genetic disorder affecting an estimated one million people worldwide. This trend is evident through recent high-profile deals…
Upcoming Events
Featured
FSHD University: The what, why and how of mindfulness
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Mindfulness is a practice that has been shown in clinical trials to reduce stress, anxiety, and depression, issues that many people living with a progressive condition like FSHD experience. These psychological symptoms can in...
Young Adults – Nutrition and supplements
Zoom Virtual Meeting , United StatesYoung Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO...
Parents’ Roundtable – FSHD science with Heloise
Zoom Virtual Meeting , United StatesParents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Heloise Hoffmann Heloise Hoffmann, now a student at Stanford University, explains the science of FSHD to your kids (and you) in easy-to-understand terms. She'll answer your questions and discuss the new treatments that are being developed, including some...
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.