FSHD Society
The FSHD Society is leading the global charge to find treatments and a cure for facioscapulohumeral muscular dystrophy (FSHD) while empowering individuals and families affected by the disease.
As the world’s largest research-focused FSHD patient organization, we connect patients, scientists, and advocates to accelerate progress and ensure that no one faces this disease alone.
Our Mission: Find treatments and a cure for FSHD while empowering our families.
Our Vision: A world free from the suffering caused by FSHD.
Our Core Values: Research | Community | Urgency
Пилатес для ЛЛПД, реабилитации и здоровья мышц: интервью с Карме Фарре, генеральным директором и ...
Adapting the Best We Can with Quinn Wilton
Бремя FSHD — Университет FSHD с Амандой Хилл и Джун Киношитой
Whole Body MRI Measures in Pediatric FSHD Patients - November 2025 Parents' Roundtable
Сила благодарности — йога на стуле с Донной Руссо, как чувствовать себя в форме с ЛЛПД
Делайте сложные вещи: движение — это лекарство, а верховая езда поможет повысить осведомленность ...
Always a Work in Progress: Growth through Movement, Connection & Adaptation with Elissa
Early Onset Insight: Findings from Dr. Erasmus’ 5yr Early Onset Study - Oct 2025 Parents' Roundtable
Fall Prevention, Part 2 with Frank Hanley, Feeling Fit with FSHD
FSHD University: The Global FSHD Innovation Hub with Amanda Rickard, Managing Director
Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion, FSHD Straight Talk
Preventing Falls: Moving with Balance, Awareness, and Intention, FSHD University with Frank Hanley
Chair Yoga with Donna Russo, Feeling Fit with FSHD Sept. 25, 2025
Smart Home Technologies for Individuals with FSHD, FSHD University with Justin Hill & Don Burke
Lived Experience Matters: The Impact of Storytelling in Rare Disease Communities with Michael King
2025 Walk & Roll Special Episode, FSHD Straight Talk with Tim Hollenback
Parenting in the Rare Disease Space with Dr. Amber Salzman of EpiCrispr; Parents' Roundtable 9/16/25
Exercise & Movement for FSHD with Frank Hanley: Young Adults, Sept. 15, 2025
Fall Prevention: Moving with Balance, Awareness & Intention: Feeling Fit, Sept. 11, 2025
Pacific & Mountain Region Chapters Meeting - Aug. 25, 2025
Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemoen
Personal Experiences with Abdominal Surgery & Assistive Devices, Young Adults with Rick Whitehead
The Opportunities of Strength Training in FSHD, FSHD University
Genetic Testing with Dr. Kathy Matthews, Parents' Rountable
More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee
Afternoon Drug Development & Clinical Trial Presentations
Activating the Local Community
FSHD Clinical Research and Clinical Trials
BetterLife FSHD Comes to Canada