Conferences

Collage featuring the documentary Complicated: the main film poster shows a silhouetted mother and child holding hands, alongside photos from screening events including a speaker presenting in a theater, attendees and families posing at screenings, and group photos from medical and advocacy conferences.

Why May is The Moment for “Complicated”

We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]

Making Misdiagnosis and Misunderstanding a Thing of the Past

What Chronic Pain Partners has done for the community lately.

Ehlers-Danlos Syndrome & Hypermobility Spectrum Patient Symposium – NYIT Recording

  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 […]

Activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8

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 […]

Jon Rodis

EDS Society Global Conference Summary – Jon Rodis

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 […]

2017 EDS Learning Conference Registration is Open

  The Ehlers-Danlos Society has scheduled the 2017 Ehlers-Danlos Society Global Learning Conference, September 7th-9th, Bally’s Hotel in Las Vegas. Registration details, including prices, are on the link below. Click here for registration information. We will be a conference sponsor again for the 6th year.   Please visit with us at our EDS Awareness booth. Contact […]

Dr. Tinkle Edits EDS Special Supplement for American Journal of Medical Genetics

Dr. Tinkle Edits Ehlers-Danlos Sydrome Special Supplement for American Journal of Medical Genetics.   Dr. Tinkle also served as an author / co-author for one-third of the papers in the supplement: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes PRZen / CHICAGO — Left Paw Press congratulates Dr. Brad T Tinkle […]

#ZebraStrong! The Ehlers-Danlos Society Zebra Rally in Baltimore’s Inner Harbor

The Ehlers-Danlos Society hosted the  #ZebraStrong, a rally in Baltimore’s Inner Harbor on Saturday, July 16, 2016 to build awareness for Ehlers-Danlos syndrome, an often painful and disabling, yet highly under-diagnosed and misdiagnosed genetic disorder. The rally was held immediately following the Society’s Global Learning Conference which was held at the Hilton Baltimore July 14-16. Over 500 attendees […]