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Family Support Services


 

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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.

Please Join the 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. Request Support Packets via email.
  • Electronic Mailing Lists (Listservs) — NNPDF facilitates electronic discussions among individuals and families affected by Niemann-Pick Disease.  We have listservs for each type of the disease (NPA, NPB, and NPC), which provide opportunities for discussion and sharing of concerns, problems, solutions and support for NPD families and others interested in the disease. NNPDF also sponsors a Siblings listserv.
  • NNPDF Web Site — The Web site contains current information on the Foundation, NPD research, fundraising 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 Disease 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 those affected by NPD.  Information is available for schools, physicians, and other health-care professionals.

The NNPDF is a non-profit 501(c)(3) organization. Donations are fully tax-deductible.