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

Posts Tagged ‘NPC’

12th Annual Niemann-Pick Disease Awareness Month

12th Annual Niemann-Pick Disease Awareness Month

Each year October is set aside to have a focal point of Niemann-Pick Disease Awareness Month! The National Niemann Pick Disease Foundation has been promoting this the last 12 years to help create buzz and awareness about this horrible disease. Along with families affected by Niemann-Pick, people […]

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2013 Hospital Hill Run Discount (40th Annual)

2013 Hospital Hill Run Discount (40th Annual)

The Niemann-Pick Children’s Fund is proud to announce it’s participation in the 40th annual Hospital Hill Run in downtown Kansas City, Missouri as a Sliver Charity Partner! HHR has been giving local charities opportunities over the last handful of years to use this stage that is expecting […]

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NIH Clinical Trial of Cyclodextrin Update

NIH Clinical Trial of Cyclodextrin Update

TRND (Therapies for Rare and Neglected Diseases) and the NIH team met with FDA representatives on December 13th to discuss the progressive plans to bring Cyclodextrin to a clinical trial in 2012. For TRND, Niemann-Pick Type C is one of six pilot projects that were selected. The […]

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NNPDF COLLABORATIVE STUDY – KAREN QUANDT, RN, MN

Karen Quandt is the Board Chair for the NNPDF.org.  A few years back she was completing a study about neurodegenerative disease in family members of patients with Niemann-Pick Type C (NPC). There differently is a relationship between NPC and other diseases. At this given time ,the current […]

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October is Niemann-Pick Disease Awareness Month 2010

October is Niemann-Pick Disease awareness month! Just wanted to pass along what many of you might be aware of if your connected in the NPC community. The below is directly from NNPDF’s site. Please participate on 10-10-10 for a $10 donation online to the NNPDF. They are […]

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