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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 Vision...is 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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NNPDF 2014 Request for Applications

The National Niemann-Pick Disease Foundation (NNPDF) is pleased to announce that, due to the diligent efforts of our family membership and their fund raising successes, the NNPDF will again be funding additional research into NPD.

Deadline by May 1st, 2014!

Family Conference Date Announced! 


Thursday, July 31st ~ Sunday, August 3rd, 2014



Visit the Family Conference page for the most recent updates!


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The Million Dollar Bike Ride

Raising Money for Rare Disease Research

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Dollar for Dollar Matching is within our reach!

NPC

Genzyme ERT Clinical Trial Update 
February 13th, 2014 


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Left to right, Alan Gilstrap, Director, Advocacy Development - Rare Disease; Genzyme Corporation  ; Sandra Cowie, NNPDF Research Committee Chairperson ; Dr. Simon Jones, Manchester Centre for Genomic Medicine St. Mary's Hospital, University of Manchester, England; Nadine Hill, NNPDF Executive Director

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For The Updates



NIH Cyclodextrin Trial
~ UPDATE ~
02/25/2014

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We received the following update from Dr. Denny Porter with reference to the NIH/TRND Cyclodextrin Clinical

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Legacy of Hope

In 2012 the NNPDF rolled out a Planned Giving Program to assist and sustain the foundation into the future. To learn more...

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A Wall Street Journal Exclusive!

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

Click HERE


Dr. Edward Schuchman Recognized for  Work on NPD (Type A & B ~ ASMD)

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Sandra Cowie - NNPDF Research Committee Chair & Dr. Edward H. Schuchman - NNPDF Scientific Advisory Board Member

Visit the Newsline to read the article.

scientist in lab

Niemann-Pick Disease
Research

~ February 2014 ~

Denny Porter
Dr. Forbes "Denny" Porter
National Institutes of Health NPC Clinical Coordinator
NIH Update on NPC Cyclodextrin Clinical Trial
(02/25/2014)

Update from Genzyme on ASMD Development Efforts
(02/13/14)


NIH Update on NPC Cyclodextrin Clinical Trial
(10/23/13)
Update from Genzyme on ASMD Development Efforts
(10/25/13)
 

Foundation Newsline

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The 2014 NNPDF Annual Board Meeting will be held in Milwaukee from Friday, January 31st through Sunday,
February 2nd, 2014. The Foundation's annual board meetings are open to all members of the NNPDF. Please refer
to the Web site for more details or contact the NNPDF Central Office if you are interested in attending.


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

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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 www.nnpdf.org

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 04/17/2014 ~ blg
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