Saturday, January 14, 2012

World RARE Disease Day on February 29th

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? Can you help us raise awareness by posting? 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. Please consider blogging about this cause. (If you have a blog- if not- forward this post to a friend or two, but cutting the url ,and sharing via email - Facebook, Twitter- or any means you'd like to choose to help this cause!)  We'd be so grateful for your support. 

Call to actions:

  1. Join our "1 Million for RARE" movement and like our Global Genes Project Facebook page:
  2. Tweet with us @GlobalGenes. Use #1Mil4RARE
  3. Forward to a friend! 

Just by sharing our message you will be helping to raise awareness as we head into World RARE Disease Day on February 29th. We (and the rare disease community) thank you for listening.


Mary at LaL Solace said...

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

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