Archive for the ‘Community’ Category

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New Ehlers-Danlos Syndromes Physician CME Education Program

Posted on February 16, 2018

      Introduced at the EDS Conference in Las Vegas   About this program.   We have had over 800 participants since we introduced the program!  The Ehlers-Danlos Syndromes Physician CME Education Program is the first online Ehlers-Danlos Syndromes course accredited to provide continuing education credits. This free program will cover the fundamental principles […]

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Ehlers-Danlos Society Receives $1 Million Gift for Hypermobile Ehlers-Danlos syndrome (hEDS) Research

Posted on February 13, 2018

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 […]

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

Posted on February 1, 2018

  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 […]

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Airport Staff Told me I “Don’t Look Ill Enough” to be Disabled and Would Not Help Me!

Posted on January 7, 2018

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 […]

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Safety Tips for EDS Patients Going to the ER

Posted on December 15, 2017

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 […]

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

Posted on September 11, 2017

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 […]

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