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

Posts Tagged ‘Rare Diseases’

37th Annual Hospital Hill Run

On June 5, 2010 Children’s Mercy Hospital had their 37th annual Hospital Hill Run that bears a lot of legacy in it’s longevity and fundraising for CMH! This year I decided that I wanted to participate in the run for Brisan and Parker but for future events […]

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Why Rare Diseases OUR Important

Why Rare Diseases OUR Important

How many times have you been looking for something at your house but you accidentally find something you previously were missing? Wouldn’t it be a shame if the prize you were seeking was within reach but you discounted that it could be that easy? What if understanding Niemann-Pick Type C disease opened up the door to help millions of Americans with other disorders involving cholesterol? Of course nothing in life is easy nor will it always be within reach. With being human comes the tendency to make oversights.

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Social Security Adds 38 New Medical Conditions that Qualify for Disability

Social Security adds 38 new medical conditions that qualify for disability help.  The new conditions range from early-onset Alzheimer’s disease to rare diseases that primarily affect children which includes Niemann-Pick Type C! Personally this seems like a relief for so many families. One of the goals of […]

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