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Rare Disease Day 2012

February 29, 2012 is National Rare Disease Day. Even on leap year, we can make this day a special day! What isn’t so RARE about rare disease is the fact that it affects all of us. Although that sounds...

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20th Annual Family & Medical Conference

This year is the National Niemann-Pick Disease Foundation’s 20th year of providing services to families affected by Niemann-Pick Disease, raising awareness, and the crucial part of funding for...

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Discount Deadline Update for Hospital Hill Run

Hello everyone! Tomorrow will be the last day that the Niemann-Pick Children’s Fund can offer the 20% discount code for the 39th annual Price Chopper Hospital Hill Run. In preparation in ordering your...

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Road To Discovery 2012 – Greg Crawford

Gregory Crawford Dean Greg Crawford is an amazing individual. If you asked if he felt amazing about what he does for the Niemann-Pick Community, he’d possibly beg to differ because of his humble...

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2012 Niemann-Pick Disease Awareness Month

Can you believe it….it is already October!?!? This year marks 20 years and counting of the NNPDF making strides in our rare disease community towards a common goal. We have to remain thankful for those...

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Happy Holidays

We wanted to wish everyone a fantastic celebration of holidays at this time of the year! 2013 is just right around the corner and for many in the rare disease community they are reminded that hope and...

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2013 Hospital Hill Run Discount (40th Annual)

The Niemann-Pick Children’s Fund is proud to announce it’s participation in the 40th annual Hospital Hill Run in downtown Kansas City, Missouri as a Sliver Charity Partner! HHR has been giving local...

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12th Annual Niemann-Pick Disease Awareness Month

Each year October is set aside to have a focal point of Niemann-Pick Disease Awareness Month! The National Niemann Pick Disease Foundation has been promoting this the last 12 years to help create buzz...

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World Rare Disease Day 2014

World Rare Disease Day is an event that occurs annually every February 28th, assuming it isn’t leap year! Essentially the last day of February. The goal behind the movement is to raise awareness about...

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New Blood Test for Niemann-Pick Type C

Contributed by reader Jenni Heavey Researchers at the University of Oxford in the UK have developed a new blood test to help people diagnosed with the lysosomal storage disorder, Niemann-Pick Disease...

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