Charleston|Orwig Goes Blue For Global Genes Project supporting rare disease!


I’ve heard of going green but going blue is good too. That’s what the staff at Charleston|Orwig, Inc. is doing by wearing blue jeans each day during September. They’re doing it “not for comfort, but for hope.” Wearing jeans serves as a reminder to vote […]

Vote4Hope Campaign – from Global Genes Project and Children's Rare Disease Network

Pepsi Refresh Grant Competition inspires rare disease groups to compete for much needed funds! Over the past few months we have had the good fortune of supporting a variety of rare disease initiatives that were all vying for Pepsi Refresh Grant monies.  The winners are […]

The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition

The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The […]

Pepsi Refresh Ideas that Help Kids

We are crowdsourcing ideas from the Pepsi Refresh ideas campaign. If you know of a pending idea that benefits kids with rare disease, please post the url on the wall of the Children’s Rare Disease Network Facebook page so that we can add it to […]

PKS Kids Needs Your Help


Pallister-Killian Syndrome affects fewer than 300 known cases in the world. So, yes, it is a rare disease and we all know how that feels don’t we? PKS Kids (; is holding its biennial medical conference in NJ in June. It means so much for […]