Ehlers-Danlos Society

The 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	Research, Education, Support, and Advocacy
Headquarters	New York
President and CEO	Lara Bloom
Key people	Lara Bloom
Website	www.ehlers-danlos.com

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.

Logo

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. For the EDS and HSD community, they 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."

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.

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

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.

Leadership

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

Board of Directors as of 2021

1. Sandra Aiken Chack
2. Susan Hawkins, Chair
3. John Zonarich, Esq., Vice Chair and Secretary
4. Susan Haskel
5. Elizabeth Herndon
6. Linda Neumann-Potash
7. Edward (Ward) J Fitzgerald III
8. Woodrow Gandy, MD
9. Melanie Macleod
10. Amy Rochlin

Medical and Scientific Board

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