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Ehlers-Danlos Society to Pursue $1 Million Genomic Research

A search for the underlying genetics and gene expression abnormalities may improve diagnostics and treatment of EDS.

A PPM Brief

The Ehlers-Danlos Society has received an anonymous $1 million grant to launch research into the genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), according to a release. This rare, degenerative disorder affects the body's connective tissue, often leaving patients with intractable pain.

 “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,” said Lara Bloom, International Executive Director of The Ehlers-Danlos Society, in the release. 

“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),” stated the donor, in the release, whose adult child is currently battling hEDS.

The Hypermobile EDS Genetic Research Network will lead the research in collaboration with the EDS Society.



Last updated on: November 16, 2018
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Letters to the Editor: Arachnoiditis, Hormone Testing, Ehlers-Danlos Syndrome
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