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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Niemann-Pick Children’s Fund, Inc is proud to announce our partnership with the Midwest Classic’s Mr. Goodcents TICKETSFore CHARITY™ program. The Midwest Classic is a professional golf event on the PGA TOUR’s 2011Nationwide Tour schedule. It will be held in Overland Park, KS at The Nicklaus Golf Club […]
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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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Niemann-Pick Children’s Fund, Inc. was organized in December of 2008 in order to raise awareness of Niemann-Pick Disease Type C and its affect on families in America; to raise money to promote research to find treatments or a cure for Niemann-Pick Disease Type C: and to provide […]
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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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