Archive for the ‘Community’ Category

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May 2020 EDS Awareness Month

Posted on March 19, 2020

Every chronic illness and issue has an awareness month, and May happens to be the month for Ehlers-Danlos Syndromes Awareness. So prepare to promote with lots of awareness activities, articles and Facebook posts with your support group members, friends or family. If you don’t have a local group contact us to get one set up with […]

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New Feature-Length Ehlers-Danlos Documentary ’We Are Visible’ – Next Session February 25, 2020

Posted on February 4, 2020

  New Feature-Length Ehlers-Danlos Fellow Zebras, medical professionals, and everyone living with an invisible condition,    We want to invite you to join the screening of the film ‘We Are Visible’, a feature-length documentary about people living with Ehlers-Danlos syndrome all across the world, at Penn State University during rare disease months.   Details:    […]

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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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2018 Excellence in Advocacy Award From AARP Ohio

Posted on March 30, 2019

John Ferman, Co-founder of the EDS Awareness a.k.a. Chronic Pain Partners 501(c)(3) non-profit program received the 2018 Andrus Excellence in Advocacy award at the AARP Ohio Volunteer Summit DInner in Columbus Ohio on October 29, 2018. John has been a full time volunteer since he retired in 2013 and has: Helped to create over 115 local […]

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New Ehlers-Danlos Syndromes Physician CME Education Program

Posted on March 29, 2019

Introduced at the EDS Conference in Las Vegas About this program. We have had over 1200 participants since we introduced the program!  The Ehlers-Danlos Syndromes Physician CME Education Program is the first online Ehlers-Danlos Syndromes course accredited to provide continuing education credits. This free program will cover the fundamental principles for the diagnosis, classification, and […]

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Living With EDS: Judgment from Others

Posted on March 25, 2019

“When you judge another, you do not define them, you define yourself” – Wayne Dyer Living with Ehlers Danlos Syndrome (EDS) is like being a doll that is stitched together but whose stitches are slowly coming apart at the seams.  You know it, you feel the pain but are powerless to stop it. You have […]

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Told Symptoms ‘All in Her Head’ Raising Awareness About Rare Disorders

Posted on October 27, 2018

BY KATHARIN CZINK AND DINA BAIR Maddie Schubert and Dr. Brad Tinkle It’s often written off as anxiety, particularly in girls. But when the symptoms are thoughtfully pieced together, a puzzling and widely unrecognized disorder is revealed. A quick check of her blood pressure is just one step in Maddie Schubert’s extensive daily routine. “This is on after […]

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An EDS Research Database for our German Doctors

Posted on October 18, 2018

To: John Ferman – President  Chronic Pain Partners Thank you for the amazing work you are doing. It is exciting to hear about the great success of the EDS Physician CME program and the planned CEU program! We are creating a research database for our German doctors with publications and information on Ehlers-Danlos syndromes. Only […]

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