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). 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 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.
8-399: 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 ." 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
16-463: A global organization. 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. Zebra (medicine) Zebra is the American medical slang for
24-461: A surprising, often exotic, medical diagnosis , especially when a more commonplace explanation is more likely. It is shorthand for the aphorism coined in the late 1940s by Theodore Woodward , professor at the University of Maryland School of Medicine , who instructed his medical interns : "When you hear hoofbeats behind you, don't expect to see a zebra." (Since zebras are much rarer than horses in
32-462: Is fascinoma . Necrotic skin lesions in the United States are often diagnosed as loxoscelism ( recluse spider bites), even in areas where Loxosceles species are rare or not present. This is a matter of concern because such misdiagnoses can delay correct diagnosis and treatment. Ehlers–Danlos syndrome is considered a rare condition and those with it are known as medical zebras. The zebra
40-537: 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." 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 . On May 1, 2016, the EDNF became The Ehlers–Danlos Society,
48-514: The availability heuristic ("events more easily remembered are judged more probable") and (b) the phenomenon first enunciated in Rhetorica ad Herennium ( c. 85 BC ), "the striking and the novel stay longer in the mind." Thus, the aphorism is an important caution against these biases when teaching medical students to weigh medical evidence. Diagnosticians have noted, however, that "zebra"-type diagnoses must nonetheless be held in mind until
56-405: The United States, the sound of hoofbeats would almost certainly be from a horse.) By 1960, the aphorism was widely known in medical circles. The saying is a warning against the statistical base rate fallacy where the likelihood of something like a disease among the population is not taken into consideration for an individual. Medical novices are predisposed to make rare diagnoses because of (a)
64-501: The evidence conclusively rules them out: In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning. The pertinent question is whether the disease is present or not. Whether it is rare or common does not change the odds in a single patient. [...] If the diagnosis can be made on the basis of specific criteria, then these criteria are either fulfilled or not fulfilled. Comparable slang for an obscure and rare diagnosis in medicine
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