Archive for the ‘Videos’ Category

We Are Visible Too, Episode 2: Caitlin O’Donnell

Posted on June 5, 2023

We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible  – a feature-length film about people with EDS – journey and add a variety of 5 – 10 minute videos of other people across the country […]

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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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Life as a zebra

Posted on August 18, 2014

An aspiring and promising young gymnast learns that she will never be able to compete again after a reconstructive surgical operation goes wrong. When her body starts to break down, she hunts for answers only to find that it would stump even the best of doctors available in the Midwest. But when she almost loses […]

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Annabelle’s Family Runs for Vascular Ehlers-Danlos Syndrome Awareness

Posted on August 14, 2014

 Many friends and volunteers made it a special day for Annabelle as she participated in the Manchester UK Color Run.  The Griffin family spearheads ongoing campaigns to fundraise and spread awareness for Vascular Ehlers-Danlos Syndrome in the UK.  COLOURFUL fundraisers painted the town not just red, but every shade possible, when they took part in “the world’s happiest […]

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The Directory for EDS Support Groups

Posted on July 12, 2014

Watch the video tour of the site in 2012: celebrated its 2nd year anniversary in July 2014 by sponsoring a booth at the EDNF Learning Conference in Houston TX.   We have come a long way in just two short years!   This video shows the launching of at the 2012 Cincinnati EDNF Learning Conference! We welcome Comments […]

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Discovery Health Channel: Ehlers-Danlos Syndrome

Posted on November 1, 2013

Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face.  It addresses EDS Hypermobility and Vascular types.

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Watch this Video on Pain Management for Ehlers-Danlos Syndrome (EDS)

Posted on August 24, 2013

Watch this MUST-SEE video presentation from the Cincinnati Children’s Hospital discussing chronic pain management for Ehlers-Danlos Syndrome. This recent “online Q & A” event was held Tuesday, 8/20/13. Their primary focus is pediatrics, but the information will be helpful to all patients. Click here to start the video program About This Session Cincinnati Children’s Hospital Medical Center […]

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EDNF Presentation by Shane Robinson, Executive Director

Posted on August 5, 2013

By Diana Cleaveland, Watch this 4-part video series of a presentation given by Shane Robinson, Executive Director of EDNF, to the New England EDS Support Group on June 30, 2013. The topics include: the past and future goals of EDNF and the EDNF Conference held August 1 -3, 2013. Though the videos are fairly long, there is […]

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