Friday, February 17, 2012

World Rare Disease Day 2012


On the last day of February, millions of people around the world will be observing World Rare Disease Day.  There will be activities across the U.S., throughout Europe, in Canada, in Australia, in China and elsewhere to focus attention on rare diseases as a public health issue.

In the U.S., a disease is considered rare if it affects fewer than 200,000 people.  Some rare diseases such as Lou Gehrig’s disease (ALS) are well known to the public.  However, many others are not, and you can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not even being studied by any medical researchers.
Keenan Cahill became internet legend, he is a boy with Maroteaux–Lamy syndrome. We want to share one of his inspirational videos, which demonstrates to everybody that people with rare conditions are fantastic!
Fifth International Rare Disease Day has a very beautiful motto:
"Rare but Strong Together"


1 comment:

  1. Thank you for supporting Rare Disease Day! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary http://www.lalsolace.org

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