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.
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
In December, our Women on Wellness Zoom group hosted Loralei Thornberg, MD, an ob/gyn at the University of Rochester. She is a rock star! She addressed issues in women’s health and specifically in women with disabilities with authority, empathy, and humor. Her talk covered topics from menstruation to menopause, birth control, pregnancy, childbirth, and sexuality….
Aiming to accelerate disease treatment and care for rare diseases See PaLaDIn Launch Press Release The FSHD Society is embarking on an exciting international collaboration to speed up the development of new treatments and care practices for FSHD and other…
Tuesday, February 27th On the 2nd Tuesday and 4th Tuesday of every month, we will bring you a new episode of FSHD Radio. These episodes highlight members of the 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...