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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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EDS Society Global Conference Summary – Jon Rodis

Posted on September 10, 2017

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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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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Causes, Signs, Diagnosis, and Treatment for Ehlers-Danlos Syndromes

Posted on July 5, 2017

By Catherine Roberts You likely haven’t given too much thought to your skin, joints, and blood vessels lately—unless you’ve suffered an wound that required stitches or a joint injury that put you off your game for a few weeks. However, for patients with Ehlers-Danlos syndromes, a set of inherited disorders that strike these connective tissues, […]

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Boston Walk to Support Marfans/EDS Research

Posted on June 18, 2017

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

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