Ehlers-Danlos Society Receives Anonymous $1M Gift for Research

Joana Carvalho, PhD avatar

by Joana Carvalho, PhD |

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Ehlers-Danlos Society gift

The Ehlers-Danlos Society has received an anonymous gift of $1 million to advance research in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related medical conditions.

The generous gift has enabled the Ehlers-Danlos Society, in collaboration with The International Consortium on EDS and HSD, to develop a priority roadmap that points to the most important research goals to be attained for EDS and HSD. This roadmap represents the Society’s long-term research action plan for EDS and HSD, and is meant to help accelerate and improve the quality and effectiveness of scientific investigations in these areas.

“People living with EDS and HSD, need and deserve research: advancement of research and ultimately patient care, is so vitally needed,” the anonymous donor said in a press release. “We are so pleased that this donation can lay the foundations for this research program, and we hope this enables others to work with The Ehlers-Danlos Society to drive this forward.”

According to the Society’s webpage, the goal of this roadmap of research priorities “is to inform researchers and funders of areas of interest that they may wish to explore or support.”

The Ehlers-Danlos Society is currently offering annual research grants of $400,000 to support clinical research, with calls for proposals being accepted in the beginning of the year and basic science proposals later in the year. The Society also is offering microgrants of $45,000 with two calls a year to support two-to-three year research projects, and $10,000 travel and registration grants all year.

“We began our research grants in 2018, and have, so far, given $700,000 for research into the Ehlers-Danlos syndromes and HSD, and a further $2 million towards finding the genetic causes behind hypermobile EDS,” said Lara Bloom, president and CEO of The Ehlers-Danlos Society.

“We know that around the world, what is desperately needed is early diagnosis, treatment, and effective multidisciplinary care for those living with EDS and HSD. Our goal is to ensure consistent and groundbreaking research into these conditions to help individuals living with these conditions, worldwide,” Bloom said.

To learn more about the Society’s research roadmap and grant timelines for 2020, visit this webpage.