Ehlers-Danlos Society

Ehlers-Danlos Society
Predecessor Ehlers-Danlos National Foundation
Formation 1985 (as Ehlers-Danlos National Foundation)
May 1, 2016 (as Ehlers-Danlos Society)
Founder Nancy Rogowski
Legal status Active
Purpose Patient advocacy
International Executive Director
 Lara Bloom
United States Executive Director
 Shane Robinson
Key people
 Shane Robinson
Lara Bloom
Website www.ehlers-danlos.com

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]

History

The Ehlers-Danlos National Foundation (EDNF) was founded in 1985 by Nancy Rogowski. In 2013, they donated money to help fund the opening of a research center in Baltimore.[7]

On May 1, 2016, in partnership with an international consortium of Ehlers-Danlos researchers, the EDNF became The Ehlers-Danlos Society.[8]

On September 7, 2017, the Ehlers-Danlos Society hosted a learning conference in Las Vegas.[9]

Leadership

There are two executive directors in the Ehlers-Danlos Society, one of which is the "International Executive Director" Lara Bloom, [10] and the other one is the "United States Executive Director", Shane Robinson.[11]

Board of Directors[12]

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

Medical and Scientific Board

  1. Fransiska Malfait, M.D., Ph.D., Chair [23]
  2. Clair Francomano, M.D., Ph.D., Vice Chair[24]
  3. Qasim Aziz, MBBS, FRCP, Ph.D.[25]
  4. Peter Byers, M.D.[26]
  5. Marco Castori, M.D., Ph.D.[27]
  6. Heidi Collins, M.D.[28]
  7. Raymond Dalgleish, Ph.D.[29]
  8. Cecilia Giunta, Ph.D.[30]
  9. Rodney Grahame CBE, M.D., FRCP, FACP, FRSA[31]
  10. Alan Hakim, MA, FRCP[32]
  11. Fraser Cummins Henderson Sr., M.D.[33]
  12. Tomoki Kosho, M.D.[34]
  13. Cathleen L. Raggio, M.D. [35]
  14. Jane Simmonds, MCSP, MMACP, FHEA[36]
  15. Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm[37]
  16. Brad Tinkle. M.D., Ph.D.[38]

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