The Ehlers-Danlos Society Receives $1 Million Gift To Advance Research

Posted November 26, 2019

NYC, USA — The Ehlers-Danlos Society is delighted to announce an anonymous gift of $1 million US dollars to advance research within the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. 

This generous donation sets the foundation for vital research, and has enabled The Ehlers-Danlos Society, in conjunction with The EDS and HSD International Consortium, to establish a roadmap to develop and convey its research priorities. The research roadmap presents a long-term action plan for the prioritisation of EDS and HSD as focal points for research, worldwide, providing opportunities to enhance the speed and effectiveness of research.

“People living with EDS and HSD, need and deserve research: advancement of research and ultimately patient care, is so vitally needed” states the donor. “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.”

The Ehlers-Danlos syndromes and hypermobility spectrum disorders are complex conditions. There remain many unanswered questions. These questions include our understanding of the basic sciences; related disorders and their true relationships with EDS and HSD; the best ways to measure and treat symptoms related to EDS and HSD; the impact of ill-health socially; and the best ways to educate and share information. 

“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,” explained 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.”

Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Research Roadmap 

During 2019, The Ehlers-Danlos Society worked with The EDS and HSD International Consortium, an independent group of medical professionals and patient experts committed to progress, research, and collaboration in the field, to develop research priorities into EDS and HSD. The research roadmap has been written to help build the foundations and focus for future research proposals and investments.  

The Ehlers-Danlos Society aims to offer grants on an annual basis, with calls for clinical research proposals early in the year, and for basic science later in the year. Grants of various values will also be offered to reflect the different nature of researchers requirements, including microgrants and support for 2-3 year projects. 

To learn more about our research priorities, and to find grant timelines for 2020, please click here. 

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