What Do We Do?

Living with Niemann-Pick Disease creates an emotional burden that may be difficult to bear. NNPDF's Family Services Program anticipates and responds to the needs of all individuals dealing with Niemann-Pick disease.  Our goal is to reduce the burden of Niemann-Pick Disease on affected individuals and families.

Our programs provide:

Emotional support to individuals and families dealing with all types of Niemann-Pick Disease;

Assistance through a crisis;

Information and ideas about issues such as doctors, clinics, insurance companies and other health and human service programs;

Practical suggestions about day-to-day care.

Join NNPDF

NNPDF's Family Support services include:

The NNPDF Newsletter and Family Supplement — The NNPDF Newsletter is sent to anyone interested in or affected by Niemann-Pick Disease. The Family Supplement is sent to NPD families and extended families who specifically request it.

The NNPDF Annual Family Conference –— The Family Conference brings together families, scientists, and medical professionals to share information and provide support. Conferences have been held every year since 1992.

NNPDF Support Packets –— Support packets provide information about the disease and support resources for NPD families. You can request Support Packets via email.

NPD Coordinator — Cate Walsh-Volkley, MS, CGC is available to discuss the various aspects of Niemann-Pick Disease with families and medical professionals. Cate is a certified genetic counselor and has worked with NPD families for many years at the Mayo Clinic and University of Pittsburgh.

Electronic Mailing List –— NNPDF facilitates electronic discussions among individuals and families affected by Niemann-Pick Disease.  We have list-servs for each type of the disease (NPA, NPB, and NPC), which provide opportunities for discussion and sharing of concerns, problems, and solutions for NPD families and others interested in the disease. NNPDF also sponsors a general Support list-serv and a Siblings list-serv.

NNPDF Website –— The website contains current information on the Foundation, NPD research, fund raising events and opportunities, and many other issues.

Online Store — Books, toys, and adaptive aids that may be helpful are featured from a variety of sources. Niemann-Pick awareness items are also available.

The NNPDF Educational Initiative –— NNPDF provides mailings of medical and educational information to assist in the correct diagnosis and referral of people with NPD.  Information is available for schools, physicians, and other health-care professionals.

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