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.
NNPDF’s Family Support Services Include:
- The NNPDF e-Newsletter — The NNPDF e-Newsletter is sent to anyone interested in or affected by Niemann-Pick Disease.
- The Annual NNPDF Family Support & Medical Conference — The annual NNPDF Family Support and Medical 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.
- NNPDF Facebook Pages — The NNPDF Central Office monitors various Facebook pages to help families connect and share information.
- NNPDF Web Site — The Web site 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.