The Ehlers–Danlos Society is an

international International is an adjective (also used as a noun) meaning "between nations". International may also refer to: Music Albums * ''International'' (Kevin Michael album), 2011 * ''International'' (New Order album), 2002 * ''International'' (The T ...

nonprofit organization A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...

dedicated to patient support, scientific research, advocacy, and increasing awareness for the Ehlers–Danlos syndromes (EDS) and

hypermobility spectrum disorder Hypermobility spectrum disorder (HSD), related to earlier diagnoses such as hypermobility syndrome (HMS), and joint hypermobility syndrome (JHS) is a heritable connective tissue disorder that affects joints and ligaments. Different forms and s ...

(HSD). 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. The society also organizes symposiums dedicated to research on EDS and HSD. The 2016 symposium resulted in the reclassification of Ehlers–Danlos subtypes. Ehlers-Danlos Society has collaborated wit
XRP Healthcare
to offer
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.

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 Zebras (, ) (subgenus ''Hippotigris'') are African equines with distinctive black-and-white striped coats. There are three living species: Grévy's zebra (''Equus grevyi''), the plains zebra (''E. quagga''), and the mountain zebra (''E. ...

." 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." Hypermobility-02

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 Baltimore is the most populous city in the U.S. state of Maryland. With a population of 585,708 at the 2020 census and estimated at 568,271 in 2024, it is the 30th-most populous U.S. city. The Baltimore metropolitan area is the 20th-large ...

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

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.

References

External links

The DICE EDS and HSD Global Registry
{{Authority control International medical and health organizations International organizations based in the United States Ehlers–Danlos syndrome Charities based in Maryland Organizations established in 2016 2016 establishments in the United States Disability organizations based in the United States