Rare Disease Day 2010

http://rarediseaseday.us/ is the site for folks in the USA. They want their partner organizations to participate in various ways, like sharing stories, etc.

Last year, for Rare Disease Day, I created a website/database where people diagnosed with Ehlers-Danlos syndrome could submit their stories. I announced it on the EDNF boards but there wasn’t much interest from EDNF (never received the permissions form they were supposed to email), nor the members, nobody used it, and so I took it down.

It was an open source CMS site, if any geeks are reading. I’ve been a webmaster since 1995-96 (though my days of being a productive member of society are winding down thanks to POTS) so something like Drupal / Mambo / Joomla was easy-peasy. I haven’t worked with those since, but I was impressed at how quick and easy those open source CMS were to customize/manage/secure.

Links:

(Circulation. 2008;118:785-791.) © 2008 American Heart Association, Inc.
Special Report
Report of the National Heart, Lung, and Blood Institute and National Marfan Foundation Working Group on Research in Marfan Syndrome and Related Disorders

Cell and Tissue Research, Volume 339, Number 1 / January, 2010
Cell interactions with the extracellular matrix (overview)

Researchers Discover a Way to Strengthen Proteins

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Comments

  • Catherine  On February 6, 2010 at 11:59 pm

    Would you be interested in blogging something for rare disease day (Feb. 28) — I would like to collect as many posts as possible for rare disease day into one post with links on the Children's Rare Disease Network blog, SNiPs. Email me if you would like to participate. hellocatcal AT gmail DOT comCatherine

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