Archive for the ‘Rare Disease Progams’ Category

Free Webinar — “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients – Recording Available

Posted on June 7, 2016

Watch the recording of this free webinar. Sponsored by    TOPIC: “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients PRESENTER: Diane O’Leary, PhD   Dr. O’Leary is currently an Associate Adjunct Professor in philosophy at University of Maryland University College Click IMAGE for the recording of this presentation. Click here for the […]

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EDS & Chiari “Unite@Night” Walks in Ohio

Posted on May 31, 2015

The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!

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CN Tower Will Have Blue Lights to Commemorate Rare Disease Day

Posted on February 27, 2015

This Saturday (2/28) Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day with the lighting of the CN Tower in blue at sundown. EDS is considered to be a rare disease; but experts say it is more prevalent than once thought – because it’s rarely diagnosed!  To learn more about prevalence, watch Dr. Neilson’s video here. By Lisa Rainford of Bloor […]

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Rare Disease Month Artwork Includes Ehlers-Danlos

Posted on February 25, 2015

Rare Disease Month brings out the images of those who are struggling with the challenges of Ehlers-Danlos Syndrome and other debilitating disorders. “Beyond the Diagnosis” is an art exhibit that features a piece depicting an EDSer and her caregiver. By Jacyln Torres Contributing Writer “Beyond the Diagnosis,” hosted for Rare Disease Month, aims to humanize portrayed […]

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Doctors’ Ignorance Stands In The Way Of Care For Those with Ehlers-Danlos Syndrome

Posted on May 19, 2014

This story applies to all people with disabilities, and addresses a situation encountered by many patients with Ehlers-Danlos Syndrome. Story by LEANA WEN Picture Katherine Streeter for NPR “Something curious was happening in the emergency room. Eight patients had come in within minutes of each other. Almost instantly, the junior resident, two interns and a medical student […]

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Free Mayfield Chiari Center Webinar – April 12, 2014

Posted on April 1, 2014

Chiari Webinar Series Join the Mayfield Chiari Center for a series of free 60-minute webinars addressing topics important to the Chiari community. Held every three months, these webinars offer practical advice for living well with Chiari and syringomyelia. We encourage support group leaders to build activities around our webinars to grow their own groups. April […]

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Hard Budget Choices for Research of Rare-Disease Cures

Posted on March 21, 2014

Difficult decisions need to be made on how to spend research money for “rare diseases”, such as Ehlers-Danlos Syndrome. This NIA study – which began in 2003 –  focuses on 5 disorders, including Ehlers-Danlos and Marfan syndromes. By AMY DOCKSER MARCUS BETHESDA, Md.—Last month, at the National Institutes of Health clinical center here, Sarah Kucharski and Fran […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
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