EXCITING ANNOUNCEMENT! An anonymous donor has presented us with a $1 million gift to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder. This is the single largest gift in the 33-year history of the Ehlers-Danlos Society, and the largest individual gift in […]
Ehlers-Danlos Syndrome & Hypermobility Spectrum Patient Symposium Click here for the recording link Note: this is a 6 hour program that you may want to listen to in segments NOTE: Times for each segment are listed below. These are not listed on the video page. The Symposium schedule is as follows: TOPICS INCLUDE: • Welcome […]
Nathalie says because her illnesses are “invisible” people often doubt whether she really is disabled! Ehlers-Danlos Syndrome is a major disability for so many. A disabled woman says she was refused help boarding a flight because she “doesn’t look ill”. Nathalie Allport-Grantham, claims a member of staff at Stansted Airport told her she was “wasting […]
December 13, 2017 By Ellen Lenox Smith, Columnist Ellen Smith is a member of the Rhode Island EDS Support Group and very active as an advocate and speaker. People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to a hospital emergency room, due to a lack of understanding in the ER staff on […]
EDS Awareness at Dayton 2017 Holistic Symposium at Miami Valley Hospital Centerville Ohio
EDS Awareness was a sponsor for the POTS 5K, at Wittenberg University in Springfield, Ohio on October 7, 1017 Click here for more information
We participated again in a very successful EDS Learning Conference. Here are connections to activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8 New EDS Physician CME Educational Online Program announced Click here for Jon Rodis EDS Society Conference Summary Click here for Dr. Chopra’s presentation […]
Jonathan Rodis Founder and Co-leader-Ehlers-Danlos New England/Massachusetts Support Group President-Massachusetts Chapter of The Marfan Foundation Chair-Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s) National Disability and Medical Advocate for Rare Disorders Member: Winthrop Disability Commission EDS Society Global Learning Conference in Las Vegas Recap As I promised, here is my recap of the EDS […]
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Popular People With Ehlers-Danlos Syndrome
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”