Hypermobile EDS Genetic Research Network


Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder.

The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).

The anonymous gift of $1 million dollars, represents the largest individual gift in the history of hypermobile EDS research.

“Because hypermobile Ehlers-Danlos lacks a known genetic cause, this truly has the potential to be a transformational gift,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society. “Through our donor’s extraordinary generosity, we are finally able to launch a virtual ‘moonshot’ in the advancement of our understanding into the most prevalent-and often most vexing-form of the Ehlers-Danlos syndromes.”

“This research endeavor represents the most comprehensive, collaborative effort to date in seeking to understand the underlying causes of hypermobile Ehlers-Danlos syndrome at the level of genes and gene expression. If we can achieve a better understanding of the underlying genetics and the gene expression abnormalities, we may be able to develop diagnostic tests and find more specific treatments for hypermobile EDS—and, potentially, the hypermobility spectrum disorders (HSD),” states the donor.

Consisting of leading authorities in fields ranging from human genetics to neurosurgery, the Hypermobile EDS Genetic Research Network will function as the nucleus for research design, data collection and analysis during the course of the genomic mapping.

For more information, please see our news release.

Peter Byers, MD
Geneticist (USA)
Marco Castori, MD, PhD
Geneticist (Italy)
Anne H. Child, MD, FRCP
Cardiovascular Geneticist (UK)
Raymond Dalgleish, PhD
Geneticist (UK)
Harry “Hal” Dietz, MD
Geneticist (USA)
Clair Francomano, MD, PhD
Geneticist (USA)
Joel Hirschhorn, ND, PhD
Geneticist (USA)
Brendan Lee, MD, PhD
Geneticist (USA)
Fransiska Malfait, MD, PhD
Geneticist/Rheumatologist (Belgium)
Brad Tinkle, MD, PhD
Geneticist (USA)