The FSH Society
About the FSH Society
Who we are
We are the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. The FSH Society harnesses the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected. We are a cause without borders.
What we do
We are solely dedicated to treating and curing FSHD through basic, translational and clinical research. We empower scientists by ensuring access to patients, resources and funds for FSHD research and development. We actualize science – the FSH Society has created and supported nearly every advance in FSHD since the mid-1990’s. We keep patients in the theater of medicine and science. The FSH Society empowers patients by ensuring them a voice to convey what it is like to live with muscular dystrophy. We engage and support tens of thousands of patients and their families and friends in thousands of communities worldwide.
Learn the latest on diagnosis and treatment of FSHD. The FSH Society online research resource includes information and tools for patients, their families, caregivers, researchers, clinicians and scientists. You are not alone: please visit our message boards for patients and for researchers. If you need to talk, please call us!
People are suffering everyday from the never-ending losses caused by FSHD. Without an understanding of how FSHD works, effective treatments and, ultimately, a cure, tens of thousands more men, women and children will become severely disabled in the next ten years. Join us in the fight! We as patients are fighting every minute of every day to save every life. Make a contribution to the cause or volunteer your time!
FSH Society, Inc. • 450 Bedford Street • Lexington, MA 02420 • Tel: 781 301-6060 • Fax: 781 862-1116