Archive for the ‘Support Group Activities’ Category

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2019 EDS Leadership Conference

Posted on May 18, 2019

We are delighted to have completed our first successful EDS Leadership event on May 17, 2019 in Mason, Ohio The conference was free, and we had over 300 life and “live stream” registered attendees from: US, AU, BE, Columbia, CA, UK, MX, Neatherlands, … Videos of the conference presentations will be posted on Leadeds.com soon. […]

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Presentation & Round Table Discussion with children with EDS

Posted on September 21, 2016

Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder! We met children with Ehlers-Danlos-Syndrome to hear their stories. Members of the EDS Chicago Support and Awareness group presented […]

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May is Ehlers-Danlos Syndrome Awareness Month

Posted on April 4, 2016

This month is Ehlers-Danlos syndrome awareness month. It’s a connective tissue disorder with no cure. Dr. Rob is “in the house” to give us details on how we can help those suffering from this often-painful condition. Andrea Julian, a leader of the Dayton Ohio EDS Support Group is interviewed. Click here for the Dayton, Ohio EDS […]

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EDS & Chiari “Unite@Night” Walks in Ohio

Posted on May 31, 2015

The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!

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The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome

Posted on April 25, 2015

Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]

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Ehlers Danlos Syndrome Support Group is starting in Rochdale, UK

Posted on October 7, 2014

 Rachel Hastie is forming an EDS Support Group for her daughters and to help raise EDS Awareness. Her youngest daughter, Ellicia Grace, is showing signs of Vascular EDS. By Amy Westlake. “A support group to help those with Ehlers Danlos Syndrome (EDS) has been set up in Rochdale by former Smithy Bridge resident, Rachel Hastie […]

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CSU Spoonies Help Students with Ehlers Danlos Syndrome

Posted on September 25, 2014

Students with chronic health conditions can get support from the Colorado State University “Spoonies” and the CSU Chronic Health Mentoring Program. We applaud these programs and hope they can serve as a model for other universities.  by Amanda Thompson. “Imagine a typical weekday for a college student. They go to classes, study, hang out with friends and participate in other leisurely activities. […]

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