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

Posts Tagged ‘Niemann-Pick Children’s Fund’

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16 Mar 2010

FDA says Hold Off on Zavesca (Miglustat) approval.

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Written by , Posted in Blog, News, Zavesca (Miglustat) | Leave a comment

On March 9, 2010 the FDA has requested additional preclinical and clinical information regarding Zavesca (Miglustat) before giving the ultimate approval that the Niemann-Pick Type C community was hoping for.

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13 Feb 2010

Social Security Adds 38 New Medical Conditions that Qualify for Disability

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Written by , Posted in Blog, News, Social Services | Leave a comment

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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26 Nov 2009

Today, there is no cure or effective treatment

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Written by , Posted in Blog, featured_slider | 1 Comment

The NPCF was formed to help create a entity that we could bring to communities that surround us the awareness needed to shed light on a disease that researchers are taking interest in. We felt after facing this reality that research has a different time line than parents yet they are making progress then why could we not help out in some shape, way or form?

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