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.
450 Bedford Street
Lexington, MA 2420
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.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.