Archive for the ‘Community’ Category

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New Feature-Length Ehlers-Danlos Documentary ’We Are Visible’ – Sold out

Posted on August 29, 2019

  New Feature-Length Ehlers-Danlos Documentary ’We Are Visible’ We are inviting the Ehlers-Danlos community to an exclusive screening of Karina Sturm’s feature-length film ’We Are Visible,’ which shows a variety of people living with Ehlers-Danlos syndrome and related conditions all around the globe.   ’We Are Visible’ – Short Summary: The Ehlers-Danlos syndromes are a group of rare connective tissue […]

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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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Father Raising Awareness with Ryan Challenge and Vascular Ehlers-Danlos Syndrome (VEDS)

Posted on August 27, 2018

  By: Hillary Floren Posted: Aug 14, 2018 06:48 AM MDT EL PASO, Texas – Ryan Dolliver is like most 3-year-old boys.  He loves to play with his sister, laugh, destroy things and he can be mischievous. Ryan has a great smile, and when he laughs it is infectious. He has no clue he is living with […]

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