?

Log in

EDS Alert

Blogging About Ehlers Danlos Syndrome

edsalert

Raph Girl Resting

Blogging About Ehlers-Danlos Syndrome

View

April 16th, 2025

This is a placeholder for a blog that collects various links about Ehlers-Danlos Syndrome, a rare genetic condition,  and pulls them together into a weekly (or bi-monthly) newsletter. 

To read the newsletter go here:
http://edsalert.wordpress.com/

If you are a member of  Livejournal you can go here and add this subscription link to your Friends List. You can continue reading the newsletter as you would normally do on your Livejournal Friends Page.
The subscription page is here:
http://syndicated.livejournal.com/eds_alert_wp/
(click on "Add this feed to your friends list ...")

All other users: you can track the newsletter by pointing your RSS feeds to this link
YOU DO NOT NEED TO FRIEND THIS JOURNAL TO READ THE NEWSLETTER.

In August of 2007, we moved this newsletter and all its contents away from Livejournal because the company's new  'no linking" policy made it impossible to link to personal web diaries and/or or websites that might contain content that Livejournal could consider offensive.  Our intention has always been to provide information about Ehlers-Danlos without censorship or judgment.

Parental Advisory: Having said this, 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.

If you have any questions, please send me an e-mail at:
edsalert@gmail.com 

July 25th, 2009

The latest newsletter is here
Remember to update your RSS feeds.

There is a new RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

June 14th, 2009

The latest newsletter is here
Remember to update your RSS feeds as I may not be able to cross-post about the newsletter each time to this journal.

We have a new RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

May 11th, 2009

The latest newsletter is here
Remember to update your RSS feeds as I may not be able to cross-post about the newsletter each time.

We have a new RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

March 23rd, 2009

The latest newsletter is here
Remember to update your RSS feeds as I may not be able to cross-post about the newsletter each time.

We've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

January 3rd, 2009

The latest newsletter is here
Remember to update your RSS feeds as I may not be able to cross-post about the newsletter each time.

We've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

October 14th, 2008

EDS Alert Newsletter No 28

Share
Raph Girl Resting
The latest newsletter is here
Remember to update your RSS feeds as I may not be able to cross-post each time.

we've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

August 11th, 2008

The EDS Alert Newsletter No. 27 is here
The newsletter will now be updated quarterly or as needed

June 6th, 2008

The EDS Alert Newsletter No. 26 is up here
The newsletter will now be updated quarterly or as needed


April 24th, 2008

The EDS Alert Newsletter No. 25 is up here
The newsletter will now be updated quarterly or as needed.

Note: Because Greatestjournal will not longer be maintaining their blogging service, we've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

March 18th, 2008

The EDS Alert Newsletter No. 24 is up here
The newsletter will now be updated quarterly.

Note: Because Greatestjournal will not longer be maintaining their blogging service, we've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

January 30th, 2008

The EDS Alert Newsletter No. 23 is now up here.
This edition of the newsletter contains several more newspaper articles about people with EDS, some dating back to 2001.

Note: Because Greatestjournal will not longer be maintaining their blogging service, we've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

January 8th, 2008

The EDS Alert Newsletter No. 22 is now up here

 Because Greatestjournal will not longer be maintaining their blogging service, we've updated the RSS feed for the EDS Alert newsletter.

LJ users: go here and add this feed to your Friends List
All other users: you can update your feeds by using this link

December 5th, 2007

EDS Alert Newsletter No. 21

Share
Raph Girl Resting
To continue reading the newsletter
 LJ users:   If you are a member of  Livejournal you can go here and add this subscription link to your Friends List. You can continue reading the newsletter as you would normally do on your Livejournal Friends Page.
The subscription page is here:
http://syndicated.livejournal.com/eds_alert_wp/
(click on "Add this feed to your friends list ...")

Non-LJ Users: Use this link
To read the newsletter go here:
http://edsalert.wordpress.com/

October 19th, 2007

To continue reading the newsletter
 LJ users:   If you are a member of  Livejournal you can go here and add this subscription link to your Friends List. You can continue reading the newsletter as you would normally do on your Livejournal Friends Page.
The subscription page is here:
http://syndicated.livejournal.com/eds_alert_wp/
(click on "Add this feed to your friends list ...")

Non-LJ Users: Use this link
To read the newsletter go here:
http://edsalert.wordpress.com/

September 15th, 2007

To continue reading the newsletter
 LJ users:   If you are a member of  Livejournal you can go here and add this subscription link to your Friends List. You can continue reading the newsletter as you would normally do on your Livejournal Friends Page.
The subscription page is here:
http://syndicated.livejournal.com/eds_alert_wp/
(click on "Add this feed to your friends list ...")

Non-LJ Users: Use this link
To read the newsletter go here:
http://edsalert.wordpress.com/

Starting in October, we will no longer be posting links to the new newsletter location in this journal, so you will need to use the subscription link.

August 24th, 2007

We have moved to a new location.   To continue reading the EDS Alert newsletter go here: http://edsalert.wordpress.com/

If you are a member of Livejournal you can subscribe to the newsletter by adding it to  your Friends List. This will allow you to continue reading the newsletter as you would normally do on your Livejournal Friends Page. The subscription page is here: http://syndicated.livejournal.com/eds_alert_wp/
(click on "Add this feed to your friends list ...")

YOU DO NOT NEED TO FRIEND THIS JOURNAL TO READ THE NEWSLETTER.

In August of 2007, we moved this newsletter and all its contents away from Livejournal because the company's new 'no linking" policy made it impossible to link to personal web diaries and/or or websites that might contain content that Livejournal could consider offensive. Our intention has always been to provide information about Ehlers-Danlos without censorship or judgment.

Parental Advisory
: Having said this, 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.

If you have any questions, please send me an e-mail at: edsalert@gmail.com
Powered by LiveJournal.com