Resources- Specific Diagnosis Card Catalog- Niemann-Pick Disease
Who to Contact
National Niemann-Pick Disease Foundation
PO Box 49
415 Madison Ave
Ft. Atkinson, WI 53538
877-287-3672 (toll-free)
920-563-0930 (phone)
920-563-0931 (fax)
E-mail: nnpdf @idcnet.com
Web: www.nnpdf.org
National Niemann-Pick Disease Foundation (NNPDF) gives emotional support, provides assistance through a crisis, shares resources and ideas about such issues as doctors, clinics, insurance companies and other health and human service programs. They provide practical suggestions about day-to-day care of the children, and establish relationships with others who, on a personal level, understand both the anguish and the recovery of being a parent of a dying child.
NNPDF provides parent-to-parent matching through membership, families are listed in a directory which is distributed annually. There is a new family packet that includes brochures, fact sheets, and family "care" information. There is also a list of organizations that can be helpful resources. NPD publishes the Niemann-Pick Newsletter, three times a year that is included in the annual membership.
Where to Go Chat with Others
Type B NNPDF
A mailing list for persons with Niemann-Pick Type B, their family, and their friends. A support service of the National Niemann-Pick Disease Foundation.
NNPDF
The National Niemann-Pick Disease Foundation provides family support, educational programs, and research funding into all
forms of Niemann-Pick Disease. This mailing list is provided as a support service for families facing the struggle with NP and is open to all interested parties. The Foundation's website offers extensive information about Niemann-Pick.
NNPDF Sibs
A mailing list for brothers and sisters of people with Niemann-Pick disease. The list allows siblings to share their experiences and feelings with each other. A support service of the
National Niemann-Pick Disease Foundation.
Learn More About It
Overview of Niemann-Pick Disease
Niemann-Pick Disease Information
from eMedicine
Niemann-Pick Disease
from OMIM
Niemann-Pick Disease
from OMIM Types A and B
Niemann-Pick Disease
from OMIM, Type C
Links
Ara Parseghian Medical Research Foundation
National Niemann-Pick Disease Foundation
Jim Lambright Niemann-Pick Foundation
International Center for Types A and B Niemann-Pick Disease