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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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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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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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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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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