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, hypermobility spectrum disorder, and related medical disorders. 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. The society also organizes symposiums dedicated to research on EDS. The 2016 symposium resulted in the reclassification of Ehlers-Danlos subtypes.
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."

History

The Ehlers-Danlos National Foundation 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, in partnership with an international consortium of Ehlers-Danlos researchers, the EDNF became The Ehlers-Danlos Society.
On September 7, 2017, the Ehlers-Danlos Society hosted a learning conference in Las Vegas.

Leadership

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

Board of Directors as of 2017

  1. Sandra Aiken Chack, Chair
  2. Susan Hawkins, Vice Chair
  3. John Zonarich, Esq., Secretary
  4. Richard Malenfant, MBA, MPH
  5. Peter Cohl
  6. Susan Haskel
  7. Elizabeth Herndon
  8. Jane Mitakides
  9. Linda Neumann-Potash
  10. Dr. Jakob Rasmussen

    Medical and Scientific Board

  11. Fransiska Malfait, M.D., Ph.D., Chair
  12. Clair Francomano, M.D., Ph.D., Vice Chair
  13. Qasim Aziz, MBBS, FRCP, Ph.D.
  14. Peter Byers, M.D.
  15. Marco Castori, M.D., Ph.D.
  16. Heidi Collins, M.D.
  17. Raymond Dalgleish, Ph.D.
  18. Cecilia Giunta, Ph.D.
  19. Rodney Grahame CBE, M.D., FRCP, FACP, FRSA
  20. Alan Hakim, MA, FRCP
  21. Fraser Cummins Henderson Sr., M.D.
  22. Tomoki Kosho, M.D.
  23. Cathleen L. Raggio, M.D.
  24. Jane Simmonds, MCSP, MMACP, FHEA
  25. Glenda Sobey, MB ChB, BSc Med, FC Derm
  26. Brad Tinkle. M.D., Ph.D.