Helping patients and families improve their quality of life and regain a sense of control

For Patients

Information for Patients and Families


Learn More About Living with FSHD

One of the FSH Society's key missions is to provide support, knowledge and experience to help FSHD patients, families and caregivers improve their quality of life, lengthen their lives, regain a sense of control and avoid isolation.  Although the physical losses continue with FSHD, thanks to the efforts of the FSH Society and countless patients, families, caregivers, medical professionals, researchers and volunteers, life for those with the disease is far better today than it was 40, 20, or even 10 years ago.

Information is available on this website to help patients, their families, and medical professionals to decide which medical professionals should work together on their care team.

Health information is available to help with day to day living and to help manage life with FSHD in different settings—at home, at work and at school. Discover how to stay healthy with FSHD.

Learn about the genetics of FSHD and about genetic testing and counseling. 

Learn More About Helping Solve FSHD

Through the FSH Society, FSHD patients have found ways to be useful to medical and clinical researchers working on their disease. The patient and medical communities are engaged in an ongoing, challenging and productive dialogue.

Involve yourself in research and clinical trials by signing up with FSHD patient registries.

Actively fight your disease by volunteering for clinical trials on new therapies. Information is available on this website about how to find and join clinical trials. 

Please consider becoming a blood, tissue or organ donor to help facilitate research breakthroughs.

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FSH Society, Inc. • 450 Bedford Street • Lexington, MA 02420 • Tel: 781 301-6060 • Fax: 781 862-1116