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Channel: The Addi and Cassi Fund - Niemann Pick Type C » Children’s Rare Disease Network
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President Obama, Please Meet Addi and Cassi To Understand Why Your Jay Leno...

President Obama’s Special Olympics joke on Jay Leno may not seem like a big deal to some Americans but for others the gaffe is disappointing. Our twins, Addi and Cassi, are afflicted with a rare and...

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Denim Blue Jeans Ribbon To Symbolize Rare Disease Awareness; New Campaign of...

The Rare Disease community now has a powerful and universal new symbol to rally around — a blue jeans denim ribbon created by the Global Genes Project and the Children’s Rare Disease Network.  The...

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Why Vote4Hope? How Kickstarting Cures For Rare Disease Through The Pepsi...

Last week, I thought about trying to raise $250k in the Pepsi Refresh Project for The Addi and Cassi Fund and for Niemann Pick Type C disease research but being part of something larger that can make a...

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Pepsi Refresh Links For Vote4Hope, Vote 4 Hope Rare Disease Campaign

If you are looking for information on the Pepsi Refresh Vote4Hope Rare Disease campaign being run by the Children’s Rare Disease Network and Global Genes Project, here are the links and information you...

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Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like...

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings throughout September to raise awareness for all rare diseases, not simply the horrific disease called Niemann Pick...

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