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]
History[edit | edit source]
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[edit | edit source]
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][edit | edit source]
- Sandra Aiken Chack, Chair[13]
- Susan Hawkins, Vice Chair[14]
- John Zonarich, Esq., Secretary[15]
- Richard Malenfant, MBA, MPH[16]
- Peter Cohl[17]
- Susan Haskel[18]
- Elizabeth Herndon[19]
- Jane Mitakides[20]
- Linda Neumann-Potash[21]
- Dr. Jakob Rasmussen[22]
Medical and Scientific Board[edit | edit source]
- Fransiska Malfait, M.D., Ph.D., Chair[23]
- Clair Francomano, M.D., Ph.D., Vice Chair[24]
- Qasim Aziz, MBBS, FRCP, Ph.D.[25]
- Peter Byers, M.D.[26]
- Marco Castori, M.D., Ph.D.[27]
- Heidi Collins, M.D.[28]
- Raymond Dalgleish, Ph.D.[29]
- Cecilia Giunta, Ph.D.[30]
- Rodney Grahame CBE, M.D., FRCP, FACP, FRSA[31]
- Alan Hakim, MA, FRCP[32]
- Fraser Cummins Henderson Sr., M.D.[33]
- Tomoki Kosho, M.D.[34]
- Cathleen L. Raggio, M.D.[35]
- Jane Simmonds, MCSP, MMACP, FHEA[36]
- Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm[37]
- Brad Tinkle. M.D., Ph.D.[38]
References[edit | edit source]
- ↑ Miller, Anna Medaris (2016-11-11). "Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints". U.S. News.
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(help) - ↑
- ↑ O'Dell, Emily Jane (2017-06-05). "The elastic girl: Living with Ehlers-Danlos Syndrome". Al Jazeera. Retrieved 2017-10-19.
- ↑ Jeffers, Barb (2017-05-01). "Local woman raises EDS awareness". Fillmore County Journal. Retrieved 2017-10-19.
- ↑
- ↑ "Ehlers-Danlos syndromes". Genetic and Rare Diseases Information Center. National Institutes of Health. Retrieved 2017-10-19.
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- ↑ "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.
- ↑
- ↑ "Shane Robinson, Maryland State Delegate". Maryland Manual On-Line. Maryland State Archives. Retrieved 2017-10-19.
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- International medical and health organizations
- International organizations based in the United States
- Ehlers–Danlos syndrome
- Charities based in Maryland
- Organizations established in 2016
- 2016 establishments in the United States
- Disability organizations based in the United States
- Medical dictionary
Contributors: Prab R. Tumpati, MD