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

Archive for the ‘Featured Blog’ Category

20th Annual Family & Medical Conference

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 research. This special occasion will be held in Nashville, Tennessee on August 16-19th! More details will develop here in […]

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Rare Disease Day 2012

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 like a vague statement, let’s think about this […]

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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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