Ehlers-Danlos Society Explained

The Ehlers–Danlos Society
Predecessor:Ehlers–Danlos National Foundation
Purpose:Research, Education, Support, and Advocacy
Headquarters:New York
Founder:Nancy Rogowski
Key People:Lara Bloom
Formation:1985 (as Ehlers–Danlos National Foundation)
May 1, 2016 (as Ehlers–Danlos Society)
Leader Title:President and CEO
Leader Name:Lara Bloom
Status:Active

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]

Logo

The Ehlers–Danlos Society zebra logo is derived from a common expression heard in medicine, "When you hear hoofbeats behind you, don't expect to see a zebra."[8] In other words, medical professionals are typically taught to look out for more-common ailments rather than uncommon or rare diagnoses. The EDS and HSD community have adopted the zebra because "sometimes when you hear hoofbeats, it really is a zebra." The Ehlers–Danlos Society is aiming "towards a time when a medical professional immediately recognizes someone with an Ehlers–Danlos syndrome or hypermobility spectrum disorder."[9]

History

The Ehlers–Danlos National Foundation (EDNF) was originally founded in 1985 by Nancy Rogowski. In 2013, they donated money to help fund the opening of a research center in Baltimore.[10]

On May 1, 2016, the EDNF became The Ehlers–Danlos Society, a global organization.[11]

Global Patient Registry

The Ehlers–Danlos Society's EDS and HSD Global Registry and Repository enables the gene search for hypermobile EDS and facilitates research into the frequency of related symptoms and other conditions. It looks to map the experiences of those living with EDS and HSD globally, and discover new forms of EDS or HSD.[12]

External links

Notes and References

  1. Web site: Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints. Miller. Anna Medaris. 2016-11-11. U.S. News.
  2. News: The Ehlers–Danlos Society to Hold Rally in Baltimore's Inner Harbor to Promote Awareness of Genetic Disorder Ehlers–Danlos Syndrome (EDS). PRWeb. 2017-10-19.
  3. Web site: The elastic girl: Living with Ehlers–Danlos Syndrome. O'Dell. Emily Jane. 2017-06-05. Al Jazeera. 2017-10-19.
  4. Web site: Local woman raises EDS awareness. Jeffers. Barb. 2017-05-01. Fillmore County Journal. en-US. 2017-10-19.
  5. News: 2016 International Symposium – May 3–6, 2016. 2016-03-10. The Ehlers–Danlos Society. 2017-10-19. en-US.
  6. Web site: Ehlers–Danlos syndromes. Genetic and Rare Diseases Information Center. National Institutes of Health. en. 2017-10-19. 2017-09-24. https://web.archive.org/web/20170924001628/https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes. dead.
  7. Web site: XRP Healthcare Sponsors The Ehlers-Danlos Society, with Vital Support via its Prescription Savings Card . Yahoo Finance . Yahoo Finance . 16 May 2024 . 16 May 2024.
  8. Web site: Why the Zebra? . 2023-10-02 . The Ehlers Danlos Society . en-GB.
  9. Web site: What Is Ehlers-Danlos Syndrome?. Nicoletta . Lanese . Live Science . 9 October 2019 . en. 2020-04-18.
  10. News: Coulter Client Ehlers–Danlos National Foundation to Open Research Clinic in Baltimore. PRWeb . May 14, 2013 . 2017-10-19 . dead . https://web.archive.org/web/20211023194642/http://www.prweb.com/releases/coulter/ednf/prweb10728485.htm . Oct 23, 2021 .
  11. News: Our History. The Ehlers–Danlos Society. 2017-10-19 . en-US . live . https://web.archive.org/web/20171019220115/https://www.ehlers-danlos.com/our-history/ . 2017-10-19 .
  12. Web site: The DICE EDS and HSD Global Registry . 2022-05-14. en-US.