Ehlers-Danlos Society Receives Major Gift To Accelerate Research Into Rare Genetic Disorder and Associated Conditions

Posted August 28, 2018

Gift to support wide range of inquiry from bench-to-bedside, social, and psychological studies to behavioral research involving the Ehlers-Danlos syndromes, hypermobility spectrum disorders, related symptoms, and associated conditions—worldwide.

BALTIMORE, MD — The Ehlers-Danlos Society has received a $200,000 gift from one of its generous benefactors to accelerate new research into the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD)—and the wide range of symptoms and comorbidities affecting those living with these too-often under or misdiagnosed disorders.

Initial funding is expected to grow significantly through a campaign for matching gifts.

“This incredibly generous gift will enable The Ehlers-Danlos Society to continue leading global efforts to expand EDS/HSD research across a wide spectrum of needs and interests from physical and psychological studies to behavioral research,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society.

“There are substantial gaps in knowledge about the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related disorders. We are interested in any proposals which fill gaps in knowledge, whether it be in diagnosis, treatment, health economics, social sciences, or the relationships between EDS/HSD and the extraordinary list of comorbidities affecting patients throughout the world,” states Education Director, Dr. Alan Hakim.

“Research is at the core of what we do. With the launch of The Ehlers-Danlos Society’s Global Registry for EDS and Related Disorders—and our Moonshot to identify the genetic markers for hypermobile EDS—we plan to accelerate the amount of research into each of fourteen Ehlers-Danlos syndromes. We hope this next round of research will help advance our efforts to improve the lives of those living with EDS/HSD throughout the world,” states Bloom.

Proposal review by the medical and scientific board of the Ehlers-Danlos Society this fall.

UPDATE: Submissions are now closed. Thank you for your interest.

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