Mission & Goals
The Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) was founded in April 2005. In January 2006, the Canadian government granted the CCNNPDF registered charity status.
The primary goals of the CCNNPDF are:
- To promote medical research into the cause of Niemann-Pick Disease and to find a cure
- To provide medical and educational information to assist in the correct diagnosis and referral of children with Niemann-Pick Disease
- To provide support to families of Niemann-Pick Disease patients
- To encourage the sharing of research information among researchers
The CCNNPDF is a sister chapter to the National Niemann-Pick Disease Foundation (NNPDF) (U.S.) and receives administrative support from the NNPDF. Money raised through the CCNNPDF is invested in Niemann-Pick Disease research through the NNPDF's research program with support from the NNPDF's Scientific Advisory Board (SAB) and Research Committee. Tammy Vaughan, chair of the CCNNPDF, serves as a Director-at-Large of the NNPDF, and is on the NNPDF's Research Committee.
In the United States, the National Niemann-Pick Disease Foundation is a non-profit [501(c)(3)] organization that supports and promotes research to find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.
The CCNNPDF's vision is a world where Niemann-Pick disease is no longer a threat to a full and productive life for patients and their families. Medical professionals, thoroughly familiar with the disease, will promptly and accurately diagnose it early in the patient’s life, and then prescribe an appropriate therapy. Families affected by Niemann-Pick disease will not be devastated by the diagnosis or its impact on their lives. Individuals with Niemann-Pick disease will have the same chance as their siblings and peers to run and play, to hope and achieve, and to live out their dreams.
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[October, 2015 ~ blg]