Join BetterLife FSHD Today!
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
Avidity Biosciences Completes Enrollment in Biomarker Cohort in Phase 1/2 FORTITUDE™ Trial
Letter from Avidity Biosciences to the FSHD community: March 31st, 2025 Dear FSHD Community, Today, we are very pleased to share with you that we have completed enrollment in the biomarker cohort in the Phase 1/2 FORTITUDE clinical trial of delpacibart braxlosiran (del-brax/) in people living with facioscapulohumeral muscular dystrophy (FSHD). You can view our…
Hope in the laboratory
Taking back control of my destiny through research BY HELOISE HOFFMANN, STANFORD UNIVERSITY For the past year, I have been working alongside a team of fellow undergraduates at Stanford University to research a therapeutic approach for FSHD. Directing this project…
Upcoming Events
Featured
Ontario FSHD 360
Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA Burnhamthorpe Community Centre 1500 Gulleden Dr, Mississauga, ON, CanadaOntario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA 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...
Women On Wellness: Parenting with a Disability
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’re thrilled to welcome this month’s guest, Marjorie Aunos, PhD, a psychologist, researcher, professional speaker, and consultant on accessibility and inclusion. She teaches organizations to solution-find and build environments that are accessible, inclusive, and welcoming...
Feeling Fit with FSHD: Waking the Qi with Jennifer Eash
Zoom Virtual Meeting , United StatesFeeling Fit with FSHD: Waking the Qi with Jennifer Eash 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for "Waking the Qi: A Vibrant Practice to Activate Internal Energy," with Jennifer Eash. Jennifer will lead a 50-minute seated...
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.