Resources- Specific Diagnosis Card Catalog- Facioscapulohumeral Muscular Dystrophy

Also known as Landouzy-Dejerine

Who to Contact

Facio-Scapulo-Humeral Society, Inc.
3 Westwood Road
Lexington, MA 02173
(781) 860-0501
Fax: (781) 860-0599
Email: carol.perez@fshsociety.org
Web: www.fshsociety.org

This is a voluntary not-for-profit organization created to address issues and needs specifically related to Facio-Scapulo-Humeral Muscular Dystrophy (FSHD), a rare inherited neuromuscular disorder. Established in 1989, the Facio-Scapulo-Humeral Society is dedicated to encouraging and promoting ongoing scientific and clinical research and development into the nature of Facio-Scapulo-Humeral Syndrome through solicitation of grants and contributions from private foundations, the pharmaceutical industry, and others. The Society also seeks to develop educational programs aimed at the medical community, government bodies, and the public. The Society accumulates and disseminates timely information about FSHD and actively cooperates with related organizations to foster communication among all interested parties. In addition, Facio-Scapulo-Humeral Society promotes professional education; provides appropriate referrals including to support groups; and promotes patient advocacy and legislation beneficial to individuals with FSHD. The Society offers a variety of educational and support materials including brochures, fact sheets, and a newsletter.

Where to go to Chat with Others

FSH Friends
FSH Friends Welcome to FSH Friends. This site is intended for the use of any individuals affected by or having an interest in Facioscapulohumeral Muscular Dystrophy as well as other types of Muscular Dystrophy.

FSH Muscular Dystrophy
This is a place for people who have FSH Muscular Dystrophy. Family and friends welcome!

Learn More About It

FSH Society Patient Brochure on Facioscapulohumeral Muscular Dystrophy (FSHD)

Facioscapulohumeral Muscular Dystrophy
From Online Mendelian Inheritance in Man (OMIM)

Facioscapulohumeral Muscular Dystrophy: Fact Sheet
From the Muscular Dystrophy Association

Facioscapulohumeral Muscular Dystrophy
From Ryan Edwards

Links

Facioscapulohumeral Muscular Dystrophy Society, Inc.

FacioScapuloHumeral (FSH or FSHD) Muscular Dystrophy & Resources For People With Disabilities

FSH-MD Support Group - United Kingdom

Muscular Dystrophy Association (MDA)

Muscular Dystrophy Association (MDA) - Australia