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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
Updated medic alert card
We have released a new version of our Medic Alert Card, with the gracious assistance of Ranae Beeker, RN, Helen Cave, and Dr. Joshura Benditt, a pulmonologist at the University of Washington. Anyone with FSHD should carry this wallet card, especially if they have breathing issues. In addition to providing space to enter your emergency…
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
Early-Onset Parent Roundtable – Connect recap
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This year's FSHD Connect, held on June 15-16, had activities and breakouts dedicated to pediatric and early-onset FSHD. Ally Roets and Debbie Eggleston will share what happened, what was learned, and discuss how our community will follow up. Join us...
FSHD University – Better Nutrition for FSHD
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT rpt The foods you eat impact your disease and can support improved muscle function in combination with supplementation and exercise. Using real FSHD patient food records, we will explore the journey to better nutrition...
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.