Welcome to the Canadian Chapter of the National Niemann-Pick Disease Foundation Website

The Canadian Chapter of the National Niemann-Pick Disease Foundation supports and promotes research to find treatments and a cure for all types of Niemann-Pick Disease, and we provide support services for individuals and families affected by NPD. Our a world where Niemann-Pick Disease is no longer a threat to a full and productive life for patients and their families.


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FSS FC Awareness
Res ResStrat

NNPDF Clinical Trials: News and Updates
vt NIH Gen Orphazyme
Updated: 02/27/2015
Updated: 10/22/2015
Evidera Pro Tool
Updated: 05/11/2015

51 ct

Click here to visit the Think Again. Think NPC. Canada Facebook Page


National Niemann-Pick Disease Foundation

~ Research Strategy ~

In 2014, the National Niemann-Pick Disease Foundation Board reviewed its research funding strategy and has produced a new strategic plan for research.

Account was taken of the needs of our Membership; current knowledge in the field of Niemann-Pick Disease; the funding strategies of other NPD organizations; and the advice and expertise of the members of the NNPDF's Scientific Advisory Board.

As a result we are pleased to announce that the NNPDF will fund Pre-Doctoral, Post-Doctoral and Early career investigator fellowships in all areas of promise - basic, translational and clinical research- with regards to Niemann Pick Disease.

The NNPDF strives to enable promising new researchers to make a career in the field of Niemann-Pick Disease, thus providing for a new generation of scientists to accelerate the pace of NPD research.

"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 diseases with respect to our ability to accelerate work at the bench to therapeutics. And much of this has 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

Current NNPDF Funded Grants & Fellowships


A Wall Street Journal Exclusive!

Trials: A Desperate Fight to Save Kids & Change Science
by Amy Dockser Marcus


Foundation Newsline
Quick Links



Here for you Always

Song written for the NNPDF by Rachel Taylor, cousin of Lorna Tyrell (mom of Naomi, NPC)

The Canadian Chapter of the National Niemann-Pick Disease Foundation was established in April 2005.

 The primary goals of the foundation are:

Our Web site can help you learn more about Niemann-Pick Disease. The NewsLine, Research, and Media pages are resources for the latest in NPD news. Meet our board of directors in the About Us section. Click here to read an introductory letter from Tammy Vaughan, Chair of the Canadian Chapter of the National Niemann- Pick Disease Foundation. Feel free to send us an email as we enjoy getting feedback from our visitors. In the Events section you'll find write-ups and photos from our fundraising events. For donation information, please visit the Donate Now page.

Thank you for visiting the CCNNPDF Web site, and please let us know if we can be of any assistance!

Foundation News:

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International Niemann-Pick Disease Organizations

Research News & Announcements:

Dr Marc Patterson
Mayo Clinic Podcast
featuring Dr Marc Patterson
speaking about
Niemann-Pick Type C.

Family Resources & Support:

The Progression of NPC in Two Children's Lives

Adam three years old
Adam Ward, NPC
1/13/90 - 6/4/00
Stacey Vorpahl
Stacey Vorpahl, NPC
1/3/85 - 10/9/04

National Niemann-Pick Disease Foundation (NNPDF)(U.S.)

The CCNNPDF works with the NNPDF to promote research, provide education, information and referrals, and to support families who have received a diagnosis of Niemann-Pick Disease.  For more information visit

Mia's NPA Timeline
Mia Walts, NPA
5/31/09 - 10/29/11

"The Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) does not engage in the practice of medicine..  It is not a medical authority nor does it claim to have medical knowledge.  This site is an educational service of the Canadian Chapter of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice.  Information contained or suggested on this Web site does not constitute medical advice.  For all information related to care, medication or treatment, the CCNNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.”

This site does not host or receive funding from advertising or from the display of commercial content.

The Canadian Chapter of the National Niemann-Pick Disease Foundation is a registered charitable organization.  Your donations are fully tax-deductible.

Web Site updated 01/15/2016 ~ blg

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