Wednesday, February 20, 2013

Rare Disease Day is coming up: February 28th

Rare Disease Day is coming up next week, with the theme: Rare Disorders Without Borders.
Here is the global site:
http://www.rarediseaseday.org 

According to the site,
"A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time."

I think ACC/AdCC counts as rare in both places. If you want to upload a video or photo to tell your story about living with a rare disease, they have a place for that.

The US page: http://rarediseaseday.us . A very cool feature on the US site (may be on the international site, too, but I didn't see it) is this: Nominate a researcher to the Rare Disease Research Hall of Fame
http://rarediseaseday.us/take-action-now/research-hall-of-fame/ . What a great way to recognize hard work conducted by researchers bent on locating cures and treatments for the rare diseases we wear?!

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