World RARE Disease Day is coming up on February 29th. Did you know that 1 in 10 Americans are affected by RARE disease and more than 350 million people are affected worldwide? 75% of RARE diseases affect children and 30% of children with a RARE disease will die before their 5th birthday.
Do these statistics astonish you?
"The Global Genes Project is a grassroots effort to bring more awareness to the rare disease community as more awareness will lead to more support and funding which will aid in developing treatments and cures. Currently only 5% of rare diseases have any sort of treatment; there are no cures."
Call to actions:
- Join the "1 Million for RARE" movement and like the Global Genes Project Facebook page: http://www.facebook.com/globalgenesproject
- Tweet with @GlobalGenes. Use #1Mil4RARE
2 comments:
Thanks for posting about this--I've never heard of this day before, and those are some striking statistics.
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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