National Niemann-Pick Disease Foundation

NNPDF to Mark 20 Years of Helping Families and Advancing Research
in 2012

Be watching for further details in the coming weeks!

Recent
Research into NPC

NEW! Update on Plans for NIH Cyclodextrin Trial Dec 16, 2011

Cyclodextrin Results in Mice May Help Shape Clinical Trial for NPC

Two New Papers on HDAC Inhibitors

NPC to be diagnosed via blood test

Scientific Conference on NPC hosted by Notre Dame College of Science

World Rare Disease Day to be Observed on February 29

World Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and will be observed on Leap Day,
February 29, 2012.

Visit our World Rare Disease Day page for ideas on how you can raise awareness
of NPD in honor of World Rare Disease Day.

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

The primary goals of the foundation 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 those with Niemann-Pick Disease
To provide support to families of Niemann-Pick Disease patients
To encourage the sharing of research information among researchers

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!

The 2012 NNPDF Annual Meeting will be held in Milwaukee from Friday, February 10 - Sunday, February 12. The Foundation's annual board meetings are open to all members of the NNPDF/CCNNPDF.
Please contact the NNPDF Central Office if you are interested in attending.

Foundation News:

Stay informed via these foundation Web site & announcement updates
Upcoming and Recent Awareness and Fundraising Events
Social Security Expands "Compassionate Allowance" Conditions List
International Niemann-Pick Disease Organizations
2011 Family Conference Photos/Slideshows

International Niemann-Pick Disease Organizations

Research News & Announcements:

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 Ward, NPC
1/13/90 - 6/4/00

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 1/17/2012

NNPDF to Mark 20 Years of Helping Families and Advancing Research in 2012