Archive for the ‘Community’ Category
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 […]
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 […]
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 […]
Posted on July 10, 2017
EDS Awareness 5K hosted by Dayton Zebras
ALL PROCEEDS WERE FOR CHRONIC PAIN PARTNERS, EDS AWARENESS
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, […]
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 […]
Posted on May 28, 2017
By MICHAEL LYON • MAY 15, 2017 The Woodmen Tower in Omaha, NE, was lit up in black and white “zebra” stripes Monday night, 5/15 for Ehlers-Danlos Syndrome (EDS) Awareness Month, which takes place in May. This iheart radio show in Omaha, NE featured Wendy Hamilton, Colleen McCoy, leaders if the Nebraska […]
Posted on May 26, 2017
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 […]