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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


FSHD Society


Address

450 Bedford Street
Lexington, MA 2420

Phone

7813016060

Email Address

[email protected]

Description

The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. The FSHD Society is a voluntary, non-profit organization with a mission to find treatments and a cure for FSHD while empowering families that have been impacted.

FSHD is a rare inherited muscle disease the main effect of which is progressive weakening and loss of skeletal muscle. The FSHD Society has catalyzed major advancements and is working to accelerate the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.

Established in 1989, the FSHD Society now has chapters across the US that are working to accelerate the development of treatments and a cure for FSHD. They seek to increase, engage, and empower all who have been impacted by FSHD. The FSHD Society continues to transform the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

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