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Monday, February 28, 2011

Updated: Did you remember?

Don't forget about Jeans Day on Monday!

Wear jeans on February 28
in support of those affected by rare diseases.

Approximately 30 million people in the U.S. are affected by some 7,000 rare diseases, most of which do not have cures or reliable treatments [like Batten Disease.]

What this group of fighters does have is hope—and the unbreakable support of friends, family and a growing number of compassionate people who want to make a difference.

Rare Disease Day is February 28th.

The Global Genes Project would like you to join the thousands of supporters all over the world by wearing jeans to raise awareness for the rare disease community. Go one step further and take a picture of yourself or your group in jeans and post it to our Facebook page. No matter how creative or how many people, you’ll be making a big statement on February 28th.

To learn more about Rare Disease Day or the rare disease community in general, we encourage you and your employees to visit the Global Genes Project on Facebook. Together, we can all show that we care about rare.

Thanks for supporting this project! Can't wait to see your photos on Facebook! 


  1. Hi Christy!
    Thank you so much for spreading the word about Rare Disease Day and this project. I actually am working with Alnylam Pharmaceuticals and NORD to spread the word as well about the day, as we are trying to collect more video entries from people living with rare diseases--NORD is creating a video 'dictionary' of rare disorders to raise awareness and educate people. I thought you might be interested in hearing more about this, and possibly even creating and sending in your own video with your story about Emma. No pressure of course :) But here is the video if that does interest you:

    All the best to you and thanks again.

    -Kelly Barrett

  2. Thanks so much for stopping by my blog and for your sweet comment. Your story has touched me and your strength is truly inspiring. Keep doing what you're doing!


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