Pages Menu
Categories Menu



The Foundation has a record of getting things done. The NNPDF was founded in 1992.  Since then, the Foundation has:

  • Raised over $5.5 million for research on NPA, NPB, and NPC, family support, education, and other activities
  • Funded research that led to the discovery of the NPC1 gene
  • Funded research that has led to the identification of numerous gene mutations for use by researchers, clinicians, and in genetic testing
  • Funded research to study the neurological effects of NPD
  • Co-sponsored the first International Symposium on NPC
  • Promoted awareness of NPD by publishing educational materials
  • Held an annual conference every year since 1993 for families affected by all types of NPD, scientists, and others
  • Published regular newsletters to keep families informed about the Foundation and the latest advancements in understanding NPD
  • Provided listservs for NPD families to communicate with each other and share their thoughts, ideas, and experiences

A Brief History of the NNPDF’s Research Program

09/08/2016 jjb