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

Posts Tagged ‘Niemann-Pick Type C’

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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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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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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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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Not So Rare | Rare Disease Day February 28 2011

Rare Disease Day 2011 Definition of Rare Disease: “A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.” (wikipedia) After all why would we refer to “rare disease” as rare when in fact we all are […]

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