Ehlers-Danlos Society

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]

The Ehlers–Danlos Society
PredecessorEhlers–Danlos National Foundation
Formation1985 (as Ehlers–Danlos National Foundation)
May 1, 2016 (as Ehlers–Danlos Society)
FounderNancy Rogowski
Legal statusActive
PurposeResearch, Education, Support, and Advocacy
HeadquartersNew York
President and CEO
Lara Bloom
Key people
Lara Bloom
Websitewww.ehlers-danlos.com

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."[7] 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."[8]

Hypermobility is one of the main symptoms of hypermobility spectrum disorders (including some types of Ehlers–Danlos Syndrome)

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.[9]

On May 1, 2016, the EDNF became The Ehlers–Danlos Society, a global organization.[10]

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.[11]

Leadership

The President and CEO of the Ehlers–Danlos Society is Lara Bloom.

Board of Directors as of 2021
  1. Sandra Aiken Chack[12]
  2. Susan Hawkins, Chair[13]
  3. John Zonarich, Esq., Vice Chair and Secretary[14]
  4. Susan Haskel[15]
  5. Elizabeth Herndon[16]
  6. Linda Neumann-Potash[17]
  7. Edward (Ward) J Fitzgerald III[18]
  8. Woodrow Gandy, MD
  9. Melanie Macleod
  10. Amy Rochlin

Medical and Scientific Board
  1. Fransiska Malfait, M.D., Ph.D., Chair[19]
  2. Clair Francomano, M.D., Ph.D., Vice Chair[20]
  3. Qasim Aziz, MBBS, FRCP, Ph.D.[21]
  4. Peter Byers, M.D.[22]
  5. Marco Castori, M.D., Ph.D.[23]
  6. Heidi Collins, M.D.[24]
  7. Raymond Dalgleish, Ph.D.[25]
  8. Cecilia Giunta, Ph.D.[26]
  9. Rodney Grahame CBE, M.D., FRCP, FACP, FRSA[27]
  10. Alan Hakim, MA, FRCP[28]
  11. Fraser Cummins Henderson Sr., M.D.[29]
  12. Tomoki Kosho, M.D.[30]
  13. Cathleen L. Raggio, M.D.[31]
  14. Jane Simmonds, MCSP, MMACP, FHEA[32]
  15. Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm[33]
  16. Brad Tinkle. M.D., Ph.D.[34]

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. Archived from the original on 2017-09-24. Retrieved 2017-10-19.
  7. "Why the Zebra?". The Ehlers Danlos Society. Retrieved 2023-10-02.
  8. October 2019, Nicoletta Lanese–Staff Writer 09 (9 October 2019). "What Is Ehlers-Danlos Syndrome?". livescience.com. Retrieved 2020-04-18.
  9. "Coulter Client Ehlers–Danlos National Foundation to Open Research Clinic in Baltimore". PRWeb. Retrieved 2017-10-19.
  10. "Our History". The Ehlers–Danlos Society. Retrieved 2017-10-19.
  11. "THE EHLERS–DANLOS SOCIETY EDS AND HSD GLOBAL REGISTRY & REPOSITORY". Retrieved 2022-05-14.
  12. "Sandra Aiken Chack". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  13. "Susan Hawkins". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  14. "John B. Zonarich, Esq". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  15. "Susan Haskel". The Ehlers–Danlos Society. Retrieved 2017-12-22.
  16. "Elizabeth Herndon". The Ehlers–Danlos Society. Retrieved 2017-12-22.
  17. "Linda Neumann-Potash". The Ehlers–Danlos Society. Retrieved 2017-12-22.
  18. "Amy Rochlin". The Ehlers Danlos Society. Retrieved 2021-10-12.
  19. "Fransiska Malfait, MD, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  20. "Clair Francomano, MD, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  21. "Qasim Aziz, MBBS, FRCP, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  22. "Peter Byers, MD". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  23. "Marco Castori, MD, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  24. "Heidi Collins, MD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  25. "Raymond Dalgleish, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  26. "Cecilia Giunta, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  27. "Rodney Grahame CBE, MD, FRCP, FACP, FRSA". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  28. "Alan Hakim, MA, FRCP". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  29. "Fraser Cummins Henderson Sr". The Ehlers–Danlos Society. Archived from the original on 2018-07-09. Retrieved 2018-01-17.
  30. "Tomoki Kosho, MD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  31. "Cathy Raggio". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  32. "Jane Simmonds, MCSP, MMACP, FHEA". The Ehlers–Danlos Society. Retrieved 2018-01-17.
  33. "Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm". The Ehlers-Danlos Society. Retrieved 2018-01-17.
  34. "Brad Tinkle, MD, PhD". The Ehlers–Danlos Society. Retrieved 2018-01-17.
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