Published: 13/02/2019 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society Receives £1 Million Gift To Advance Rare Disease Research, Education & Care

LONDON, UK — The Ehlers-Danlos Society is pleased to announce an anonymous gift of £1 million pounds (1.32 million USD) to advance research, education, and patient care those living with the Ehlers-Danlos syndromes (hEDS), hypermobility spectrum disorders (HSD), and myriad associated symptoms and conditions.

A Transformative Gift

“We are extraordinarily grateful for this transformative gift. This will enable us to expand upon and complete our hypermobile EDS genomic sequencing ‘moonshot,’ and jumpstart a powerful new telemedicine research and care program called Project Echo,” states The Ehlers-Danlos Society’s International Executive Director, Lara Bloom.

Hope for the future

“Hearing Lara speak at last year’s Ehlers-Danlos Society International Symposium in Ghent gave our family tremendous hope that improvement is possible for those living with the daily challenges of EDS and so many related conditions and symptoms,” states the donor who wishes to remain anonymous. “We not only see this gift as a sound investment in the advancement of EDS research and care, but a potential catalyst for others to become involved,” states the UK-based donor.

Accelerating Ehlers-Danlos Research, Care, And Community

“This is an exciting time for Ehlers-Danlos research, diagnosis, and care,” states Bloom. “Around the globe, hundreds of researchers are engaged in all facets of EDS/HSD discovery, diagnosis, education, and care. From the International Consortium, the Hypermobile EDS Genomic Research Network, and the EDS/HSD Comorbidity Coalition, to Project Echo, The Ehlers-Danlos Society finds itself at the epicenter of a new culture of accelerating advancement. This gift strengthens our cause to ensure earlier diagnosis, greater awareness, and better treatment options for EDS, HSD, and their associated symptoms and conditions. For this, we are eternally grateful.”

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Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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