World RARE Disease Day is on Feb 29th!
| January 13, 2012 | Posted by Roxy under Advocacy |
World RARE Disease Day will be on February 29th! 1 in 10 Americans are affected by a 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.
The Global Genes Project is a grassroots effort to bring more awareness to the rare disease community to secure funding for developing treatment and ultimately, a cure. Currently only 5% of rare diseases have any sort of treatment.
-Join the “1 Million for RARE” movement and like the Global Genes Project Facebook page
-Tweet @GlobalGenes. Use #1Mil4RARE
-Spread the word!
This post was written by
Roxy is a full-time, first-generation college student. She loves blogging because it is a creative outlet that allows her to take breaks from academic writing. She lives with her daughter and fiancé in beautiful Southern Oregon on their "mini-farm" with their 4 cats, chickens, and rabbits.
10 Days Left 
13 Days Left 
Contest Closed 
14 Days Left 
Thank you for sharing your story in honor of 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. It is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace — a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.org