Archive for July, 2009

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News: Ehlers-Danlos Syndrome On NPR

July 30, 2009

“President Obama is on the road, promoting health care reform before Congress goes on August recess. That issue is of utmost importance to Barbara Calder. She’s been unable to qualify for health insurance since she was diagnosed with Ehlers-Danlos Syndrome, a rare genetic disease. Now, Barbara is hoping to sell her home in Colorado and move her family abroad. As she tells Dick Gordon, having the disease has changed her view of health care in the U.S. As a dual citizen, she thinks she’ll be able to get better care in Belgium.” The Story on NPR here.

Listen to it here

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EDS Alert Newsletter No. 33

July 25, 2009

Please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds – the link to set up your own feed is here.

This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below or e-mail us at: edsalert@gmail.com. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from articles that require subscriptions or paid memberships to access.

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News: Swiss Doctor Speculates Michael Jackson May Have Suffered From Ehlers-Danlos

July 17, 2009

This article is pure speculation and is written in French. Translated version is here. Original article is here.

Edited to add: see comment from the author of this article below.