Ehlers-Danlos Society

The Ehlers-Danlos Society is an international non-profit organization dedicated to patient support, scientific research, advocacy, and increasing awareness for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorder (HSD), and related medical disorders.[1] The society has organized multiple events around the world in an attempt to raise awareness for EDS. 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.[4][5] The 2016 symposium resulted in the reclassification of Ehlers-Danlos subtypes.[6]

Ehlers-Danlos Society
PredecessorEhlers-Danlos National Foundation
Formation1985 (as Ehlers-Danlos National Foundation)
May 1, 2016 (as Ehlers-Danlos Society)
FounderNancy Rogowski
Legal statusActive
PurposePatient advocacy
International Executive Director
Lara Bloom
United States Executive Director
Shane Robinson
Key people
Shane Robinson
Lara Bloom
Websitewww.ehlers-danlos.com

Ehlers-Danlos Society reference to zebras is borrowed 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 testing for rare diagnoses. For the EDS community, they adopted the zebra because they believe that "sometimes when you hear hoofbeats, it really is a zebra." Ehlers-Danlos Society is aiming "towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome." [7]

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.[8]

On May 1, 2016, in partnership with an international consortium of Ehlers-Danlos researchers, the EDNF became The Ehlers-Danlos Society.[9]

On September 7, 2017, the Ehlers-Danlos Society hosted a learning conference in Las Vegas.[10]

Leadership

There are two executive directors in the Ehlers-Danlos Society, one of which is the "International Executive Director" Lara Bloom,[11] and the other one is the "United States Executive Director", Shane Robinson.[12]

Board of Directors as of 2017[13]
  1. Sandra Aiken Chack, Chair[14]
  2. Susan Hawkins, Vice Chair[15]
  3. John Zonarich, Esq., Secretary[16]
  4. Richard Malenfant, MBA, MPH[17]
  5. Peter Cohl[18]
  6. Susan Haskel[19]
  7. Elizabeth Herndon[20]
  8. Jane Mitakides[21]
  9. Linda Neumann-Potash[22]
  10. Dr. Jakob Rasmussen[23]

Medical and Scientific Board
  1. Fransiska Malfait, M.D., Ph.D., Chair[24]
  2. Clair Francomano, M.D., Ph.D., Vice Chair[25]
  3. Qasim Aziz, MBBS, FRCP, Ph.D.[26]
  4. Peter Byers, M.D.[27]
  5. Marco Castori, M.D., Ph.D.[28]
  6. Heidi Collins, M.D.[29]
  7. Raymond Dalgleish, Ph.D.[30]
  8. Cecilia Giunta, Ph.D.[31]
  9. Rodney Grahame CBE, M.D., FRCP, FACP, FRSA[32]
  10. Alan Hakim, MA, FRCP[33]
  11. Fraser Cummins Henderson Sr., M.D.[34]
  12. Tomoki Kosho, M.D.[35]
  13. Cathleen L. Raggio, M.D.[36]
  14. Jane Simmonds, MCSP, MMACP, FHEA[37]
  15. Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm[38]
  16. Brad Tinkle. M.D., Ph.D.[39]

References
  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. Retrieved 2017-10-19.
  7. October 2019, Nicoletta Lanese-Staff Writer 09. "What Is Ehlers-Danlos Syndrome?". livescience.com. Retrieved 2020-04-18.
  8. "Coulter Client Ehlers-Danlos National Foundation to Open Research Clinic in Baltimore". PRWeb. Retrieved 2017-10-19.
  9. "Our History". The Ehlers-Danlos Society. Retrieved 2017-10-19.
  10. "The Ehlers-Danlos Society Global Learning Conference 2017: Thursday, Sept. 7, 10 a.m. to 7 p.m. -". Las Vegas Sun. Retrieved 2017-10-19.
  11. Edelstein, Breanna (2017-08-20). "Pelham schools face new civil rights investigation". Eagle-Tribune. Retrieved 2017-10-19.
  12. "Shane Robinson, Maryland State Delegate". Maryland Manual On-Line. Maryland State Archives. Retrieved 2017-10-19.
  13. "Our People". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  14. "Sandra Aiken Chack". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  15. "Susan Hawkins". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  16. "John B. Zonarich, Esq". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  17. "Richard Malenfant, MBA, MPH". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  18. "Peter Cohl". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  19. "Susan Haskel". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  20. "Elizabeth Herndon". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  21. "Jane Mitakides". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  22. "Linda Neumann-Potash". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  23. "Dr. Jakob Rasmussen". The Ehlers-Danlos Society. Retrieved 2017-12-22.
  24. "Fransiska Malfait, MD, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  25. "Clair Francomano, MD, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  26. "Qasim Aziz, MBBS, FRCP, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  27. "Peter Byers, MD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  28. "Marco Castori, MD, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  29. "Heidi Collins, MD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  30. "Raymond Dalgleish, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  31. "Cecilia Giunta, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  32. "Rodney Grahame CBE, MD, FRCP, FACP, FRSA". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  33. "Alan Hakim, MA, FRCP". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  34. "Fraser Cummins Henderson Sr". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  35. "Tomoki Kosho, MD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  36. "Cathy Raggio". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  37. "Jane Simmonds, MCSP, MMACP, FHEA". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  38. "Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  39. "Brad Tinkle, MD, PhD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
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