World Rare Disease Day

February 29, 2016 is the rarest day of the year! It's also World Rare Disease Day.

Join us and support kids and families with rare diseases by wearing blue jeans or a Global Genes Ribbon to show that you care. If you'd like a Ribbon, make a comment in this post (or send a direct message with your address) and we'll try our best to get you one in time. 

Did you know that 1 in 10 people in the U.S. have a rare disease, and 80% of these people are kids? Or that there are over 7,000 rare diseases, yet, many diseases are so small in population, there are only 15% of these rare diseases that even have a foundation to support their unique needs? For more facts: https://globalgenes.org/

This year, we are partnering with a Durham Public School, Morehead Montessori Magnet School, and the PTA to talk about rare genetic diseases, share Global Genes Ribbons, encourage everyone to wear blue jeans in honor of Luka and all kids and families who fight rare diseases so they don't feel alone. We're also looking at ways to be creative to show grace and courtesy by writing stories, drawing pictures, and making cards for kids in the hospital. 

For ideas on how to talk about rare genetic disease with kids: http://lukathelionfoundation.org/2016/02/05/world-rare-disease-day-february-29-2016/

As always, feel free to share your ideas within this post on ways that we can all spread awareness of rare genetic diseases.