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A Rare Lysosomal Storage Disease
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Archive for the ‘Rare Disease’ 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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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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The Doctors TV Show | Niemann-pick Type C disease | Gavin Lopez

The Doctors TV Show | Niemann-pick Type C disease | Gavin Lopez

Gavin and His Mother’s Heartbreaking Story Kristen and Fernando Lopez have 3 children from Little Elm, Texas. Gavin there oldest son has Niemann-Pick Type C disease. Recently they were on the TV show The Doctors talking about their guilt about having a child with Niemann-Pick Type C. […]

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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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