Ehlers-Danlos Society

The Ehlers–Danlos Society
PredecessorEhlers–Danlos National Foundation
Formation1985 (as Ehlers–Danlos National Foundation)
May 1, 2016 (as Ehlers–Danlos Society)
FounderNancy Rogowski
Legal statusActive
PurposeResearch, Education, Support, and Advocacy
HeadquartersNew York
President and CEO
Lara Bloom
Key people
Lara Bloom
Websiteehlers-danlos.com

The Ehlers–Danlos Society is an international nonprofit organization dedicated to patient support, scientific research, advocacy, and increasing awareness for the Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD).[1] The society has organized multiple events around the world in an attempt to raise awareness for EDS and HSD. These events include a rally in Baltimore's Inner Harbor, and a conference in India.[2][3] The society also organizes symposiums dedicated to research on EDS and HSD.[4][5] The 2016 symposium resulted in the reclassification of Ehlers–Danlos subtypes.[6] Ehlers-Danlos Society has collaborated with XRP Healthcare to offer a Prescription Savings Card, providing up to 80% off medications for EDS and HSD, including pain relievers and muscle relaxants. Accepted at over 68,000 U.S. pharmacies, including Walmart, CVS, and Walgreens, this partnership offers significant savings. [7]

  1. ^ Miller, Anna Medaris (2016-11-11). "Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints". U.S. News.
  2. ^ "The Ehlers–Danlos Society to Hold Rally in Baltimore's Inner Harbor to Promote Awareness of Genetic Disorder Ehlers–Danlos Syndrome (EDS)". PRWeb. Retrieved 2017-10-19.
  3. ^ O'Dell, Emily Jane (2017-06-05). "The elastic girl: Living with Ehlers–Danlos Syndrome". Al Jazeera. Retrieved 2017-10-19.
  4. ^ Jeffers, Barb (2017-05-01). "Local woman raises EDS awareness". Fillmore County Journal. Retrieved 2017-10-19.
  5. ^ "2016 International Symposium – May 3–6, 2016". The Ehlers–Danlos Society. 2016-03-10. Retrieved 2017-10-19.
  6. ^ "Ehlers–Danlos syndromes". Genetic and Rare Diseases Information Center. National Institutes of Health. Archived from the original on 2017-09-24. Retrieved 2017-10-19.
  7. ^ "XRP Healthcare Sponsors The Ehlers-Danlos Society, with Vital Support via its Prescription Savings Card". Yahoo Finance. Yahoo Finance. 16 May 2024. Retrieved 16 May 2024.