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Research Funded by NNPDF and CCNNPDF

Research Funded by NNPDF and CCNNPDF

Grant & Fellowship Information


Latest Research Highlights from the NNPDF Research Committee

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The research jointly funded by the National Niemann-Pick Disease Foundation and the Canadian Chapter of the National Niemann-Pick Disease Foundation is made possible in great part due to the efforts of our NPD families and their extended support network via local community-sponsored events. The NNPDF and CCNNPDF is truly grateful for this collaborative support throughout the USA and Canada.

The NPD community is one of the most collaborative there is. The level of idea/data sharing among scientists is remarkable. We are also a model for other rare disease with respect to our ability to accelerate work at the bench to therapeutics. And much of this had been made possible by the family-researcher partnerships that have sustained this work over the past 20 years.” – Dr. Dan Ory, Current NNPDF Scientific Advisory Board member & past SAB Chair (Sept. 2007 ~ Jan. 2014)

A key element to the foundation’s research strategy is the ability to track funds raised within the communities of our family membership.  Great care is given to identify monies received at the NNPDF Central Offices through family fundraising efforts so that a specific designation by disease type and a restriction towards research can be made.  The NNPDF is proud to ensure our family membership that 100% of the funds raised through their community events are directed towards NPD research!

09/12/2014 nmh


Glossary of Terms:

EMA – European Medicines Agency (European equivalent of FDA)
ERT – Enzyme Replacement Therapy
FDA – United States Food and Drug Administration
HDAC – Histone Deacetylase Inhibitors
ICV – Intracerebroventricular
IND – Investigational New Drug
i-IND – Individual Investiational New Drug
IRB – Institutional Review Board
NICHD – National Institute of Child Health and Human Development
NIH – National Institutes of Health
NPC – Niemann-Pick Disease Type C Disease
TRND – Therapeutics for Rare and Neglected Diseases