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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.
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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.
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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
Ten things I wish someone had told me…
…when I was first diagnosed with FSHD (infantile onset) by Archer Sverdrup, St. Louis, Missouri Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every couple of months another decline will happen. Once you stop trying to predict progression and just focus on living your life you will be happier….
Meet del-brax, Avidity’s FSHD therapeutic candidate
Results presented by Avidity of interim data from its Phase 1/2 clinical trial in FSHD were all the buzz at this year’s International Research Congress and FSHD Connect conference. We also wrote about it on our blog. If you…
Upcoming Events
Featured
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we...
Team Captain Rally & Social Hour
Zoom Virtual Meeting , United States7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we celebrate our amazing Team Captains and Walk Leaders for all of the incredible work that they do. We’ll provide a few tips and tricks for...
Women On Wellness – Summer Smørgasbord
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'll be discussing a variety of topics that have been raised recently: The types of providers we use to take care of our unique needs Managing fatigue How to maintain a sense of humor when...
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.