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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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22nd Annual NNPDF Family Support and Medical Conference  

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

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Hotel, Family Conference Registration and Helping Hand Stipend now available online!


Genzyme ERT Clinical Trial Update 
June 27th, 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


For The Updates



NIH Cyclodextrin Trial
~ UPDATE ~
06/27/2014

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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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WSJ

A Wall Street Journal Exclusive!

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

Click HERE



Rare Diseases Research:
Clinical Trial for Niemann-Pick Type C

*
Click to watch the video

Determined to find a treatment for children with the degenerative brain disease Niemann-Pick Type C, Steven Walkley, D.V.M., Ph.D., turned a serendipitous laboratory discovery into a successful national research collaboration with other academic institutions and the National Center for Advancing Translational Sciences' program for rare diseases (Therapeutics for Rare and Neglected Diseases). 

These efforts led to an NIH Phase 1 clinical trial testing cyclodextrin 
as a therapy for children with this disease.

scientist in lab

Niemann-Pick Disease
Research

~ June 2014 ~

Denny Porter
Dr. Forbes "Denny" Porter
National Institutes of Health NPC Clinical Coordinator
 
Update on NPC Cyclodextrin
Clinical Trial

(NEW ~ 06/27/14)
NIH Update from HDACi
Clinical Trial

(NEW ~ 06/27/14)
NIH Update on NPC Cyclodextrin Clinical Trial
(02/25/2014)

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

 

Foundation Newsline

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The 2014 NNPDF Board of Director's  will be meeting in San Francisco, CA on Thursday, July 31st

at 9:00 AM.  The NNPDF board meetings are open to all members of the NNPDF. Please refer to

the NNPDF Family Conference to be held in San Francisco, CA for more inforamtion ~ or ~ contact

the NNPDF Central Offices at:  nnpdf@nnpdf.org if you are interested in attending.  You may learn more about the

current members of the Board of Director's at: Meet the NNPDF BoD's


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:

 

earth graphic
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 07/24/2014 ~ blg
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