Support Group Activities
Making Misdiagnosis and Misunderstanding a Thing of the Past
What Chronic Pain Partners has done for the community lately.
2019 EDS Leadership Conference
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. […]
Presentation & Round Table Discussion with children with EDS
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 […]
May is Ehlers-Danlos Syndrome Awareness Month
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 […]
EDS & Chiari “Unite@Night” Walks in Ohio
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!
The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome
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, […]
EDS Support Group in Lancaster
This EDS Support Group is promoting EDS Awareness in Lancaster. By EMILY PEIFFER Staff Writer epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic disorder, are now at the checkout counters of four local Turkey Hill markets. The driving force behind […]
