FSHD Global Research Foundation
The FSHD Global Research Foundation is an Australian not-for-profit organization dedicated to finding a treatment and cure for Facio-Scapulo-Humeral Dystrophy (FSHD).
FSHD is one of the most common forms of muscular dystrophy and genetic hereditary diseases seen in skeletal muscle. Its prevalence varies from country to country depending on medical diagnostic competence.
In 2008 a study by Orphanet entitled ‘Prevalence of rare diseases: A bibliographic study' lists FSHD as the most prevalent form of muscular dystrophy in Europe, while in some third world countries its prevalence is not recorded at all.
In most countries research into FSHD has been severely neglected.
The FSHD Global Research Foundation has funded seven research projects over the past two years in the USA, Netherlands, Italy, France and Australia. In 2009 funding led to the first FSHD embryonic stem cell line being developed by Sydney IVF. This and subsequent FSHD stem cell lines are available free to any international researchers who wish to carry out further FSHD research.
The FSHD Global Research Foundation has funding available for research directed at the twin goals of better understanding the human disease Facio-Scapulo-Humeral Dystrophy and identifying treatments. Although all applications are considered on their merits, the Foundation considers certain areas to be of special importance. These priority areas of interest are reviewed and updated periodically.