Archive for the ‘Awareness’ Category

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EDSed Episode 1: The Norris Lab

Posted on November 21, 2022

EDSed is our new series of full-length interviews with international EDS experts.  These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our community. All films are produced by journalist, and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You […]

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Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid

Posted on November 2, 2022

For our November newsletter, journalist Karina Sturm interviewed Brianne Benness, the host of No End In Sight, a podcast about life with chronic illness and a chronically ill person’s journey to diagnosis. She is a co-founder of Stories We Don’t Tell, where she talks about hypermobility, mast cell disorders, and recontextualizing old experiences using new […]

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Jules Machias about their EDS journey and new middle-grade book “Fight + Flight”

Posted on June 23, 2022

For our July newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! Journalist Karina Sturm had the pleasure to talk to author Jules Machias about their life with Ehlers-Danlos syndrome, their career as a writer, […]

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New Feature-Length Ehlers-Danlos Documentary ’We Are Visible’ IS NOW ON LINE

Posted on August 24, 2020

  New Feature-Length Ehlers-Danlos Documentary   Fellow Zebras, medical professionals, and everyone living with an invisible condition,          We want to invite you to join the On Line screening of the film ‘We Are Visible’, a feature-length documentary about people living with Ehlers-Danlos syndrome     Click here for the link to the […]

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Chronic Pain Partners Educational Series -Free Ehlers-Danlos Educational Programs

Posted on April 10, 2020

     Now that most of us are asked to stay in our home this is a perfect time to increase our knowledge about Ehlers Danlos Syndromes.  Learn more through these Free educational video programs about Ehlers-Danlos Syndromes presented by over 60 experts covering 50 EDS related topics.  Ehlers Danlos Syndromes is a genetic condition that is NOT “Rare” but “Rarely […]

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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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