Ehlers-Danlos Society: Difference between revisions

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{{Infobox non-profit|name=Ehlers-Danlos Society|predecessor=Ehlers-Danlos National Foundation|purpose=Patient advocacy|website={{URL|https://www.ehlers-danlos.com}}|founder=Nancy Rogowski|key_people=[[Shane Robinson (politician)|Shane Robinson]]<br>[[Lara Bloom]]|formation=1985 (as Ehlers-Danlos National Foundation)<br>May 1, 2016 (as Ehlers-Danlos Society)|leader_title=International Executive Director|leader_name=[[Lara Bloom]]|status=Active|leader_title2=United States Executive Director|leader_name2=[[Shane Robinson (politician)|Shane Robinson]]|image=File:EhlersDanlosSociety.png}}
{{Infobox organization
| name = Ehlers-Danlos Society
| image = <!-- Image link here -->
| caption =  
| formation =  
| type = Non-profit organization
| headquarters =  
| location =  
| region_served = Worldwide
| language = English
| leader_title =  
| leader_name =  
| main_organ =  
| website = [https://www.ehlers-danlos.com/ www.ehlers-danlos.com]
}}


The '''Ehlers-Danlos Society''' is an [[International organization|international]] [[non-profit|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.<ref>{{Cite web|url=https://health.usnews.com/wellness/articles/2016-11-11/ehlers-danlos-syndrome-more-than-just-stretchy-skin-and-bendy-joints|title=Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints|last=Miller|first=Anna Medaris|date=2016-11-11|website=U.S. News|archive-url=|archive-date=|dead-url=|access-date=}}</ref> 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.<ref>{{Cite news|url=http://www.prweb.com/releases/2016/06/prweb13494815.htm|title=The Ehlers-Danlos Society to Hold Rally in Baltimore’s Inner Harbor to Promote Awareness of Genetic Disorder Ehlers-Danlos Syndrome (EDS)|work=PRWeb|access-date=2017-10-19}}</ref><ref>{{Cite web|url=http://www.aljazeera.com/indepth/features/2017/05/elastic-girl-living-ehlers-danlos-syndrome-170514115635143.html|title=The elastic girl: Living with Ehlers-Danlos Syndrome|last=O'Dell|first=Emily Jane|date=2017-06-05|website=Al Jazeera|access-date=2017-10-19}}</ref> The society also organizes symposiums dedicated to research on EDS.<ref>{{Cite web|url=http://fillmorecountyjournal.com/local-woman-raises-eds-awareness/|title=Local woman raises EDS awareness|last=Jeffers|first=Barb|date=2017-05-01|website=Fillmore County Journal|language=en-US|access-date=2017-10-19}}</ref><ref>{{Cite news|url=https://www.ehlers-danlos.com/2016-international-symposium-may-3-6-2016/|title=2016 International Symposium - May 3–6, 2016|date=2016-03-10|work=The Ehlers-Danlos Society|access-date=2017-10-19|language=en-US}}</ref> The 2016 symposium resulted in the reclassification of [[Classification of Ehlers–Danlos syndrome|Ehlers-Danlos subtypes]].<ref>{{Cite web|url=https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes|title=Ehlers-Danlos syndromes|website=Genetic and Rare Diseases Information Center|publisher=National Institutes of Health|language=en|access-date=2017-10-19}}</ref>
The '''Ehlers-Danlos Society''' is a global community dedicated to improving the lives of individuals affected by [[Ehlers-Danlos syndromes]] (EDS) and [[hypermobility spectrum disorders]] (HSD). The society focuses on research, education, advocacy, and support for those living with these connective tissue disorders.


== History ==
== Mission ==
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]].<ref>{{Cite news|url=http://www.prweb.com/releases/coulter/ednf/prweb10728485.htm|title=Coulter Client Ehlers-Danlos National Foundation to Open Research Clinic in Baltimore|work=PRWeb|access-date=2017-10-19}}</ref>
The mission of the Ehlers-Danlos Society is to advance and accelerate research and education in Ehlers-Danlos syndromes and hypermobility spectrum disorders, raising awareness and improving diagnosis and management of these conditions.


On May 1, 2016, in partnership with an international consortium of Ehlers-Danlos researchers, the EDNF became The Ehlers-Danlos Society.<ref>{{Cite news|url=https://www.ehlers-danlos.com/our-history/|title=Our History|work=The Ehlers-Danlos Society|access-date=2017-10-19|language=en-US}}</ref>
== Research ==
The society funds and supports research initiatives aimed at understanding the genetic and molecular basis of Ehlers-Danlos syndromes. It collaborates with researchers and medical professionals worldwide to develop new diagnostic criteria and treatment options.


On September 7, 2017, the Ehlers-Danlos Society hosted a learning conference in Las Vegas.<ref>{{Cite web|url=https://lasvegassun.com/events/2017/sep/07/50108/|title=The Ehlers-Danlos Society Global Learning Conference 2017: Thursday, Sept. 7, 10 a.m. to 7 p.m. -|website=Las Vegas Sun|language=en|access-date=2017-10-19}}</ref>
== Education ==
The Ehlers-Danlos Society provides educational resources for patients, healthcare providers, and the general public. It organizes conferences, webinars, and workshops to disseminate the latest information on EDS and HSD.


== Leadership ==
== Advocacy ==
There are two executive directors in the Ehlers-Danlos Society, one of which is the "International Executive Director" Lara Bloom,<ref>{{Cite news|url=http://www.eagletribune.com/news/pelham-schools-face-new-civil-rights-investigation/article_4e4a415d-7281-5ce3-bb7f-54d804020b15.html|title=Pelham schools face new civil rights investigation|last=Edelstein|first=Breanna|date=2017-08-20|work=Eagle-Tribune|access-date=2017-10-19|language=en}}</ref> and the other one is the "United States Executive Director", [[Shane Robinson (politician)|Shane Robinson]].<ref>{{Cite web|url=http://msa.maryland.gov/msa/mdmanual/06hse/html/msa15460.html|title=Shane Robinson, Maryland State Delegate|website=Maryland Manual On-Line|publisher=Maryland State Archives|access-date=2017-10-19}}</ref>
The society advocates for the needs of individuals with Ehlers-Danlos syndromes and hypermobility spectrum disorders. It works to influence policy and improve access to healthcare and support services.


=== Board of Directors<ref>{{Cite news|url=https://www.ehlers-danlos.com/our-people/#board|title=Our People|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref> ===
== Support ==
# Sandra Aiken Chack, Chair<ref>{{Cite news|url=https://www.ehlers-danlos.com/sandra-chack/|title=Sandra Aiken Chack|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
The Ehlers-Danlos Society offers support to individuals and families affected by EDS and HSD through online communities, support groups, and informational resources.
# Susan Hawkins, Vice Chair<ref>{{Cite news|url=https://www.ehlers-danlos.com/susan-hawkins/|title=Susan Hawkins|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# John Zonarich, Esq., Secretary<ref>{{Cite news|url=https://www.ehlers-danlos.com/john-zonarich/|title=John B. Zonarich, Esq.|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Richard Malenfant, MBA, MPH<ref>{{Cite news|url=https://www.ehlers-danlos.com/richard-malenfant/|title=Richard Malenfant, MBA, MPH|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Peter Cohl<ref>{{Cite news|url=https://www.ehlers-danlos.com/peter-cohl/|title=Peter Cohl|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref>
# Susan Haskel<ref>{{Cite news|url=https://www.ehlers-danlos.com/susan-haskel/|title=Susan Haskel|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref>
# Elizabeth Herndon<ref>{{Cite news|url=https://www.ehlers-danlos.com/elizabeth-herndon/|title=Elizabeth Herndon|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref>
# Jane Mitakides<ref>{{Cite news|url=https://www.ehlers-danlos.com/jane-mitakides/|title=Jane Mitakides|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref>
# Linda Neumann-Potash<ref>{{Cite news|url=https://www.ehlers-danlos.com/linda-neumann-potash/|title=Linda Neumann-Potash|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref>
# Dr. Jakob Rasmussen<ref>{{Cite news|url=https://www.ehlers-danlos.com/jakob-rasmussen/|title=Dr. Jakob Rasmussen|work=The Ehlers-Danlos Society|access-date=2017-12-22|language=en-US}}</ref>


=== Medical and Scientific Board ===
== See also ==
# Fransiska Malfait, M.D., Ph.D., Chair<ref>{{Cite news|url=https://www.ehlers-danlos.com/fransiska-malfait/|title=Fransiska Malfait, MD, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
* [[Ehlers-Danlos syndromes]]
# Clair Francomano, M.D., Ph.D., Vice Chair<ref>{{Cite news|url=https://www.ehlers-danlos.com/clair-francomano/|title=Clair Francomano, MD, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
* [[Hypermobility spectrum disorders]]
# Qasim Aziz, MBBS, FRCP, Ph.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/qasim-aziz/|title=Qasim Aziz, MBBS, FRCP, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
* [[Connective tissue disorder]]
# Peter Byers, M.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/peter-byers/|title=Peter Byers, MD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Marco Castori, M.D., Ph.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/marco-castori/|title=Marco Castori, MD, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Heidi Collins, M.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/heidi-collins/|title=Heidi Collins, MD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Raymond Dalgleish, Ph.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/raymond-dalgleish/|title=Raymond Dalgleish, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Cecilia Giunta, Ph.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/cecilia-giunta/|title=Cecilia Giunta, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Rodney Grahame CBE, M.D., FRCP, FACP, FRSA<ref>{{Cite news|url=https://www.ehlers-danlos.com/rodney-grahame/|title=Rodney Grahame CBE, MD, FRCP, FACP, FRSA|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Alan Hakim, MA, FRCP<ref>{{Cite news|url=https://www.ehlers-danlos.com/alan-hakim/|title=Alan Hakim, MA, FRCP|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Fraser Cummins Henderson Sr., M.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/fraser-cummins-henderson/|title=Fraser Cummins Henderson Sr.|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Tomoki Kosho, M.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/tomoki-kosho/|title=Tomoki Kosho, MD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Cathleen L. Raggio, M.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/cathy-raggio/|title=Cathy Raggio|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Jane Simmonds, MCSP, MMACP, FHEA<ref>{{Cite news|url=https://www.ehlers-danlos.com/jane-simmonds/|title=Jane Simmonds, MCSP, MMACP, FHEA|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm<ref>{{Cite news|url=https://www.ehlers-danlos.com/glenda-sobey/|title=Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm |work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>
# Brad Tinkle. M.D., Ph.D.<ref>{{Cite news|url=https://www.ehlers-danlos.com/brad-tinkle-md-phd/|title=Brad Tinkle, MD, PhD|work=The Ehlers-Danlos Society|access-date=2018-01-17|language=en-US}}</ref>


==References==
== External links ==
{{reflist}}
* [https://www.ehlers-danlos.com/ Official website]


[[Category:International medical and health organizations]]
{{Medical organization}}
[[Category:International organizations based in the United States]]
[[Category:Medical and health organizations]]
[[Category:Ehlers–Danlos syndrome]]
[[Category:Non-profit organizations]]
[[Category:Charities based in Maryland]]
[[Category:Genetic disorders]]
[[Category:Organizations established in 2016]]
[[Category:Connective tissue diseases]]
[[Category:2016 establishments in the United States]]
<gallery>
[[Category:Disability organizations based in the United States]]
File:EhlersDanlosSociety.png|Ehlers Danlos Society Logo
{{dictionary-stub1}}
File:Hypermobility-02.jpg|Hypermobility Illustration
</gallery>

Latest revision as of 23:53, 24 February 2025

Ehlers-Danlos Society
[[File:|250px|alt=]]
Formation
Type Non-profit organization
Headquarters
Membership N/A
Language English
Leader title
Leader name
Website www.ehlers-danlos.com


The Ehlers-Danlos Society is a global community dedicated to improving the lives of individuals affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The society focuses on research, education, advocacy, and support for those living with these connective tissue disorders.

Mission[edit]

The mission of the Ehlers-Danlos Society is to advance and accelerate research and education in Ehlers-Danlos syndromes and hypermobility spectrum disorders, raising awareness and improving diagnosis and management of these conditions.

Research[edit]

The society funds and supports research initiatives aimed at understanding the genetic and molecular basis of Ehlers-Danlos syndromes. It collaborates with researchers and medical professionals worldwide to develop new diagnostic criteria and treatment options.

Education[edit]

The Ehlers-Danlos Society provides educational resources for patients, healthcare providers, and the general public. It organizes conferences, webinars, and workshops to disseminate the latest information on EDS and HSD.

Advocacy[edit]

The society advocates for the needs of individuals with Ehlers-Danlos syndromes and hypermobility spectrum disorders. It works to influence policy and improve access to healthcare and support services.

Support[edit]

The Ehlers-Danlos Society offers support to individuals and families affected by EDS and HSD through online communities, support groups, and informational resources.

See also[edit]

External links[edit]



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