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A Rare Lysosomal Storage Disease
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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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11 Feb 2010

UPDATE 2-US FDA panel backs new use for Actelion drug [Zavesca]

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

We’re a few weeks behind in updating this information but some big steps have happened recently regarding the potential FDA approval for Zavesca. The US Advisory panel on Jan. 12th recommended approval! This snippet is from the article on Reuters regarding the breaking news: Doctors can prescribe […]

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22 Dec 2009

Historic FDA related drug advisory committee will meet | Zavesca

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

This is an email from Nadine Hill of the NNPDF. This is good news. If the FDA does say lets move forward that means more families might be able to participate because the drug would be FDA approved. All though this isn’t a cure it is one […]

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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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21 Nov 2009

New therapies – Niemann-Pick type C disease

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Written by , Posted in Blog, News, Therapies, What is NPC | Leave a comment

Abstract: Niemann-Pick disease type C (NP-C) is an autosomal recessive disorder characterized by progressive neurological deterioration leading to premature death.

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