Archive for the ‘Awareness’ 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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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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Ehlers-Danlos Syndromes – Structurally Unsound

Posted on August 7, 2017

Hypermobile EDS is difficult to diagnose because it devastates the whole body and causes numerous symptoms. By Mary Vuong Sarrah Hannon once led an active life of triathlons, marathons and rock climbing. Now she refrains from lifting a gallon of milk. Hannon, 30, lives with Ehlers-Danlos Syndrome (EDS), a group of genetic connective tissue disorders. The […]

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