A Rare Lysosomal Storage Disease

Archive for January 2011

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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Welcome! Come Check Out Our Blog

Welcome! Make sure to stop by our Blog or subscribe to updates! We look forward to connecting with you. To read more posts:

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Video Project for Niemann-Pick Disease 2011

This year we are preparing a video series with our partnership with Cisco, the makers of the Flip Camcorder . Over the next few months we will be reaching out to families affected by Niemann-Pick Type C and Niemann-Pick disease as a whole and will be taking […]

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