National Niemann-Pick Disease Foundation

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.

A Message from NNPDF Chair Karen Quandt

The 21st Annual Family Conference will be held in Baltimore, MD this year at the Sheraton Inner Harbor.

Visit the updated Family Conference page for more info.

New NPC Clinical Trial Announcement

Genzyme logo

Visit the Enzyme Replacement Therapy page for the announcement.

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

Niemann-Pick Disease Research

~ May 2013 ~

Update on Cyclodextrin Trial -
May 3rd Call Recording, transcript & Follow-up Inquiries Available
(05/16/13)

Update from Genzyme on ASMD Development Efforts
( 05/07/13)

Update on Cyclodextrin Trial
(05/03/13)

NEW! PERSEVERE Window Decals Available! Proceeds Benefit the NNPDF

Foundation News:

Stay informed via these foundation Web site & announcement updates Upcoming and Recent Awareness and Fundraising Events Update on NIH Plans for Cyclodextrin Clinical Trial for NPC 2013 NNPDF Family Conference Being Planned for Baltimore, MD Need Help Finding the Info You Need? Here It Is!
		International Niemann-Pick Disease Organizations

Research News & Announcements:

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

Family Resources & Support:

Taillefer Family Story - "Tiny but Mighty" Baby Monica - 05/12
2013 June e-Newsletter *NEW*
NNPDF Annual Family Support and Medical Conference
2013 Family Conference ~ Baltimore, MD - *NEW*
2012 Family Nashville, TN Conference A Success! Links to photos added! - 11/12
2011 Conference - Norfolk, Virginia ~ Links to Photos/Slideshows
Social Security Expands "Compassionate Allowance" Conditions List - 2/10
2012 Niemann-Pick Disease October Awareness Month - 10/29
Genetic Alliance Publication: Making Sense of Your Genes
EQUIPMENT EXCHANGE - Car Seat for Older Child Available
Needed: Motion Table with Vibra-Glide Wheelchair Available Car Bed Available
Understanding Niemann-Pick Disease Type C and its potential treatments.
State-specific resources to help NPD families
CMS - ASK MEDICARE: support and information for caregivers

"Here for You Always" Music Video Featuring Our Members

Canadian Chapter National Niemann-Pick Disease Foundation
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. Visit www.nnpdf.ca

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

“The National Niemann-Pick Disease Foundation (NNPDF) 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 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 NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.?

This Web site is a service of the National Niemann-Pick Disease Foundation's Family Services Program, made possible by the financial support of our member families and other generous donors and grantors. This site receives no government funding, nor does it host or receive funding from advertising or from the display of commercial content.

This site complies to the HONcode standard for trustworthy health information: verify here.

The National Niemann-Pick Disease Foundation is a 501(c)(3) organization. Your donations are fully tax-deductible.

Web Site updated 06/14/2013

This site complies with the HONcode standard for trustworthy health information: verify here.