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A Rare Lysosomal Storage Disease
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Archive for the ‘Research’ Category

New Blood Test for Niemann-Pick Type C

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 type C (NPC). The progressive and fatal inherited disease occurs in one in every 150,000 children […]

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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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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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2011 NNPDF Medical & Family Conference

2011 NNPDF Medical & Family Conference

Niemann-Pick Disease Conference On July 28th-30st the National Niemann-Pick Disease Foundation held their 19th annual Medical & Family Conference. It was a place where families who didn’t sign up to be in “the club” of Niemann-Pick Disease Types A, B, C gathered to connect with families and […]

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Potential Breahthrough in Niemann-Pick Type C Research

Potential Breahthrough in Niemann-Pick Type C Research

One thing that I’ve personally learned is not to get excited about many things when it comes to research for Niemann-Pick Type C. The job of PR firms and Press Releases are to generate buzz, hype, excitement, and positive feelings. Sometimes there are a lot of finite […]

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