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Welcome To The EDS Alert Newsletter

January 7, 2009

This is a blog that will collect various links about Ehlers-Danlos Syndrome and pull them together into a quarterly newsletter. Please feel free to refer people who have EDS (or want to learn more about EDS) to this blog.

The information in the blog is organized in the form of quarterly newsletters using categories such as Blogs/Online Diaries (people talking about what it is to have EDS), Medical Articles, Disability/Legal issues, News etc. The most recent newsletter is always at the top of the page and you use the “previous entries” buttons at the bottom of each screen to scroll back to look for earlier articles. To read just the newsletters in reverse chronological order click here.

There are several places where EDS patients can locate medical information along with personal tips from fellow EDS patients. Most are free.

As we find new sources, we will update this post – so feel free to bookmark it.

Here the personal overview from one of our volunteers of what it means to have EDS.  If you need to contact us you can do one of two ways: leave a comment to one of the newsletters or drop us an e-mail at: edsalert@gmail.com

How To Follow This Blog: You can come back every few months and check for new updates.  You can also sign up to receive the newsletter by e-mail. You can find the subscription button on the right sidebar or by clicking here and following the instructions.

If you use a Blog Reader you can set up an RSS feed by clicking here.

If you’ve wandered here from LiveJournal, you can keep track of the EDS Alert Newsletter by adding the newsletter to your Livejournal Friends List:  http://syndicated.livejournal.com/eds_alert_wp/

Parental Advisory: Finally, some of the personal blogs and websites we may link to in the course of collecting information about Ehlers-Danlos may contain content that is adult in nature. If you are a parent, please take note of this.

Posting Policies: 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: The Olympic Torch in Ashbourne

July 17, 2012

Ashbourne News | The Olympic Torch in Ashbourne.

This is a reposted link from another person’s/group’s website. Click on the link to read and/or participate in their discussion.

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Blog: Is there a link between sleep disorders and Ehlers-Danlos Syndrome?

July 17, 2012

Is there a link between sleep disorders and Ehlers-Danlos Syndrome? – Sleepdisorders.com.

This is a reposted link from another person’s/group’s website. Click on the link to read and/or participate in their discussion.

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Forum: Problems Finding A Kansas Geneticist To Get A Diagnosis

July 17, 2012

Problems Finding A Geneticist To Get A Diagnosis – Discussion – Ehlers-Danlos National Foundation Support Community – Inspire.

This is a reposted link from another person’s/group’s website. Click on the link to read and/or participate in their discussion.

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Forum: Drs in St. Louis, MO?

July 17, 2012

Drs in St. Louis, MO? – Discussion – Ehlers-Danlos National Foundation Support Community – Inspire.

This is a reposted link from another person’s/group’s website. Click on the link to read and/or participate in their discussion.

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News: Ben, eight, decides to sell his toys to raise funds for charity

July 17, 2012

Ben, eight, decides to sell his toys to raise funds for charity (From Watford Observer).

This is a reposted link from another person’s/group’s website. Click on the link to read and/or participate in their discussion.

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News: US horse whisperer comes to Abergavenny

June 23, 2012

US horse whisperer comes to Abergavenny (From South Wales Argus).

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Blog: What is Ehlers-Danlos Syndrome? (CNN)

June 23, 2012

What is Ehlers-Danlos Syndrome? – – CNN.com Blogs.

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