Nnpdf

National Niemann-Pick Disease Foundation Mission & Goals

The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is a non-profit, patient advocacy and family support organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease, through education, collaboration and research. Founded in 1993, NNPDF serves families throughout the nation at all stages of their Niemann-Pick journey. The NNPDF is the US member organization of the International Niemann-Pick disease Alliance (INPDA).

Vision for the Future

We envision an enduring patient support community that embodies strength, hope and empathy for those affected by all Niemann-Pick disease types. We believe deeply in the future of research that promotes clinical treatments with potential to improve patient quality of life and with intent to ultimately cure all Niemann-Pick disease types.

We are committed to:

• Supporting and empowering patients and families affected by NPD by meeting them where they are in their NPD journey.
• Upholding a balanced, unbiased approach with families, researchers, clinicians and industry to move treatment forward to provide a variety of therapies and to work together toward a cure. We encourage full transparency among all stakeholders in the Niemann-Pick disease community.
• Supporting basic science and clinical research through awareness and collaborative funding initiatives.
• Adhering to a written code of conduct that fosters respect for all, regardless of treatment choices or research perspectives, which maintains patient privacy and follows the national HIPPA regulations.
• Encouraging and promoting advocacy and collaborative community partnerships across the NPD community, both in the U.S. and internationally.
• Respecting the diversity of Board members, employees, families, researchers, clinicians and industry, and governing the NNPDF ethically and transparently according to NNPDF Bylaws.

Foundation History

The National Niemann-Pick Disease Foundation is a national non-profit 501(c)(3), rare disease network of families dedicated to providing empowerment resources, support and education for families, caregivers and patients affected by all Niemann-Pick disease types.

We are families, patients and compassionate friends across the U.S. that share hope, promote research and raise awareness for NPD. We are dedicated to supporting and empowering one another, through education of potential therapies for all Niemann-Pick disease types. We work tirelessly as volunteers, caregivers, counselors, and fundraisers for patient support, research and clinical treatment.