National Niemann-Pick Disease Foundation

The National Niemann-Pick Disease Foundation (NNPDF) is a non-profit [501(c)(3)] organization that provides support services to individuals and families affected by all types of Niemann-Pick Disease (NPD). Program services and educational opportunities are provided in the United States, Canada and internationally to families facing a diagnosis of NPD. The NNPDF also works to raise funds to sponsor and promote research towards finding a cure or treatments for Niemann-Pick Disease (NPD).

The NNPDF was established in February of 1992 by a group of seven parents of children suffering from Niemann-Pick Disease. Concerned with cutbacks in federal funds for medical research, and knowing that without research there was little hope for their children, these parents united to form an organization that would eventually become the National Niemann-Pick Disease Foundation.

Since its inception and still today, the Board of Directors of the NNPDF consists of family members of loved ones diagnosed with Niemann-Pick Disease. Parents, grand-parents, siblings, cousins, aunt and uncles have all lent their time, talent and treasure to the goals and objectives of the foundation knowing that, as an orphan disease, there would be few resources available to do the necessary work and research associated with the foundation. All of the NNPDF’s members of the board serve in a volunteer capacity and for many it is their first time serving on a foundation board of directors.

The NNPDF’s current family membership stands at over 450 families with loved ones diagnosed with NPD. Our constituent database made up of medical professionals, corporate members, and most important, individuals, families, and friends affected by Niemann-Pick Disease stands at over 20,000 members.