Synonyms: FSH dystrophy | FSHD | Facioscapulohumeral muscular dystrophy | Facioscapulohumeral myopathy | Landouzy-Dejerine dystrophy | Landouzy-Dejerine myopathy
A rare neuromuscular disease characterized by progressive muscle weakness with focal involvement of the facial shoulder and limb muscles.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version February 2026
Newly diagnosed with
Facioscapulohumeral dystrophy?
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Advocacy Organizations
Abrafeu – Brazilian Association for Facioscapulohumeral Dystrophy
"To promote a better quality of life for individuals with facioscapulohumeral muscular dystrophy through the dissemination of information, guidance to families, society, and professionals interested in their treatment.“
Association Aux Pas du Coeur – Côte d’ivoire
Our organization wants to raise awareness and recognition of rare diseases in Ivory Coast. Our mission is to: Raise awareness and campaign to help with the diagnosis and free therapeutic care of patients. Request and/or contribute to actions relating to the training of the medical profession to be able to make a final diagnosis and ensure continuous monitoring of patients easily.
Fundacion Powerchair Football Argentina
To develop Powerchair Football in Argentina in order to integrate people with motor disabilities (SMA, Duchenne muscular dystrophy, Achondroplasia, Rare Diseases) into sports practice and to promote their social inclusion, based on empowerment, independence, and the creation of new bonds and friendships.
Girls Chronically Rock
Girls Chronically Rock empowers and inspires people in the disability community through fashion, storytelling, and advocacy. Our mission is to create visibility, spark confidence, and promote inclusion by combining style with purpose.
Jett Foundation
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey.
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation's (NDF) mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding clinical research focused on treatments and a cure.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.