National Niemann-Pick Disease Foundation (NNPDF)

Mission:
We are a non-profit group dedicated to supporting and empowering patients and families affected by Niemann-Pick disease through education, collaboration and research.

Vision:
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.