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Family Support Services



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 Facebook Pages – The NNPDF Central Office has multiple Facebook pages that we monitor to help families connect and share information.
  • NNPDF Support Packets — Support packets provide information about the disease and support resources for NPD families. Request Support Packets via email.
  • 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.