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A Rare Lysosomal Storage Disease
Contact: info@npcfund.org

Archive for the ‘Blog’ Category

Happy Valentines Day!

Happy Valentines Day!

Happy Valentines Day from the Niemann-Pick Children’s Fund! Each and every holiday whether that is Christmas or Valentines day, we ought to seek out and remember the basic principles of each of those days. The “love” and “thanks” that is part of the root meaning should reminds […]

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2012 Hospital Hill Run (discount)

2012 Hospital Hill Run (discount)

The 39th Annual Hospital Hill Run presented by Price Chopper is taking place on June 2, 2012 and the Niemann-Pick Children’s Fund has a great opportunity to help promote awareness of Rare Disease! We are looking for participants for the UMKC School of Medicine 5k Run\ Walk, […]

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NIH Clinical Trial of Cyclodextrin Update

NIH Clinical Trial of Cyclodextrin Update

TRND (Therapies for Rare and Neglected Diseases) and the NIH team met with FDA representatives on December 13th to discuss the progressive plans to bring Cyclodextrin to a clinical trial in 2012. For TRND, Niemann-Pick Type C is one of six pilot projects that were selected. The […]

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Vegas Casino Night Update

Vegas Casino Night Update

On November 11, 2011 we held our Vegas Casino Night at the Hilliard Art Gallery here in downtown Kansas City. The weather was beautiful for a November day opposed to having snow, rain, and sleet! We all had prepared for this big day and were brought together […]

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Matthew Lesko in Town For Vegas Casino Night

Matthew Lesko in Town For Vegas Casino Night

Matthew Lesko who is TV’s best known personality who genuinely seeks to educate the American pubic about available grant opportunities, will be attending our Vegas Casino night on November 11, 2011 at the Hilliard Art Gallery. You may best know him as providing detailed information on how […]

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