Rare Disease Day- Feb. 28th

We need your help! On Thursday, February 28th, we'd like to ask that all of our friends, family and supporters join us in observing Rare Disease Day.

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year -- a rare day) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

For those of you who have followed Kaitlyn's Korner, you probably already know that Niemann-Pick Disease is among one of the 7,000 rare diseases that exist. Kaitlyn was one of only five children in the United States living with Niemann-Pick, Type A before she passed away. The National Institute of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.

Let's raise some awareness so that we don't have to read awful statistics like this. Better yet, let's raise some awareness so that some day children like Kaitlyn will no longer have to suffer from rare disease because there will be better genetic testing, more research, actual treatments, and CURES!

So, what can you do to show your support??

• Post Kaitlyn's picture on your Facebook page. Heck, use it as your profile picture for even more exposure! Make sure to tag @GlobalGenes in all your pictures
• Wear your blue PERSEVERE wristband or t-shirt and post pics to my/your Facebook page wearing them along with messages of support for Rare Disease Day
• Join the Global Gene's Project's Wear That You Care movement and wear your favorite pair of blue jeans in support of rare and genetic disease awareness
• If you're so inclined, make a donation to the National Niemann-Pick Disease Foundation in memory of Kaitlyn Kay Bourgeault, NPD, Type A. Donate here: National Niemann-Pick Disease Foundation