Archive for the ‘Uncategorized’ Category

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

Posted on July 18, 2016

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 […]

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Registration Process for Webinars

Posted on April 10, 2016

NOTE:  Please register early. A limited number may attend live, and a free recording of the entire session will be provided for later replay.   Instructions: – When you click the “registration link” on the announcement page, you will be  asked to register for the meeting. . . Insert your name and email address, then […]

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Dayton Zebras Hosting First Annual Zebra Picnic

Posted on April 1, 2016

  We are hosting our first annual EDS picnic this year, on May 15, 2016, with a goal of picnics across the nation. We have already stretched beyond the Ohio border and have picnics going on in Kentucky, and more states will join quickly as news spreads. Through educational programs, support groups and activities like this picnic we […]

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A Young Chicago Girl is Using Fashion to Cope with Her Ehlers-Danlos Syndrome

Posted on January 6, 2016

A young Chicago girl, who is coping with her Ehlers-Danlos Syndrome (EDS) is interviewed with Dr. Brad Tinkle.   They discuss her symptoms of EDS and her desire to develop fashion designs that could help EDSers feel more comfortable. Click here to learn more about Dr. Brad Tinkle Click here for the original source of […]

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When Food Allergies Are Actually Mast Cell Activation Syndrome

Posted on May 1, 2015

Brynn had a long history of adverse reactions to many foods she was eating, but finally determined it was not traditional food allergies! She has found ways to manage her Mast Cell Activation Syndrome – including EpiPens and a service dog. By Kira Peikoff The Symptoms Brynn Duncan was 11 years old when her stomach started to revolt against food. Frequently […]

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“The Feldenkrais Method & other Somatic Approaches to Improve Function and Ease”

Posted on January 1, 2015

Join us for a FREE online learning session! On March 17, Cynthia Allen presents “Feldenkrais Method & other Somatic Approaches for EDS”.   Sponsored by www.bodysupportstore.com    WHEN: Tuesday, March 17, 20155  at 7:30-9:30pm, EST TOPIC:  “The Feldenkrais Method & other Somatic Approaches to Improve Function and Ease”    PRESENTER:   Cynthia Allen, GCFP,  STMI Cynthia Allen is the  Chief Executive Officer of Integrative Learning […]

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How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
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