Archive for the ‘Community’ Category

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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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Interview with Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children

Posted on June 23, 2022

  For our July newsletter, journalist Karina Sturm spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically […]

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Caring for a person with Ehlers-Danlos syndrome: An interview with two caregivers

Posted on April 19, 2022

                John Ferman                                                       Gilbert Torres Ehlers-Danlos syndrome is a condition that affects every person differently. Even within the same type, symptoms can […]

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Run like a Zebra For EDS Race

Posted on April 29, 2021

Chronic Pain Partners 501(c)(3) is a gold Sponsor for this Event.     Florence, WI | Saturday, May 21, 2022 at 9:00 AM CST   info@runlikeazebra.com | 715-301-0905 Race Information 1k & 5K Run, Walk or Roll Place Date and Time 749 Central Ave Florence, WI 54121 Saturday, May 21, 20229:00 am CST Details The […]

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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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Cincinnati Children’s Hospital Connective Tissue Disorder Clinic Video

Posted on July 28, 2020

Cincinnati Children’s Hospital has a Connective Tissue Disorder Clinic helping children with Ehlers-Danlos Syndrome. This video celebrates the hospital’s impact on children and their families.

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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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