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
Fall vaccine guide
Via Ranae Beeker, RN, here’s a clear and concise guide to recommended vaccines, updated for the fall of 2024. For people with neuromuscular conditions, this is especially important because: Falling severely ill and being bedridden for a time can result in loss of muscle. With FSHD, it is that much more difficult to recover muscle…
Mighty micro RNAs
by Yi-Wen Chen, PhD, Children’s National Hospital, Washington DC Many Nobel Prize-winning discoveries have contributed to the advancement of research and treatments for facioscapulohumeral muscular dystrophy (FSHD), and the work recognized in yesterday’s announcement follows in this tradition. The Nobel…
Upcoming Events
Featured
Everything Early Onset
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It will be a space...
New England FSHD 360
University of Massachusetts Medical Center Plantation Street, Worcester, Massachusetts, United StatesCo-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in New England, as well as from biopharmaceutical companies that...
Women On Wellness
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our...
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.