Predecessor | Ehlers–Danlos National Foundation |
---|---|
Formation | 1985 (as Ehlers–Danlos National Foundation) May 1, 2016 (as Ehlers–Danlos Society) |
Founder | Nancy Rogowski |
Legal status | Active |
Purpose | Research, Education, Support, and Advocacy |
Headquarters | New York |
President and CEO | Lara Bloom |
Key people | Lara Bloom |
Website | ehlers-danlos |
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]