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NNPDF Organizational History

NNPDF Organizational History

On February 10, 1992, six families with children suffering from Niemann-Pick disease met at the National Institutes of Health at Bethesda, Maryland.  Concerned with cutbacks in funds for medical research and knowing without research there was little hope for their children, they decided to form a foundation – The Niemann-Pick Type C Foundation, Inc. Bylaws were drafted and a board of directors was selected. Service activities began immediately and the first year saw many accomplishments.

  • A Newsletter offering information and support was sent out
  • A Directory of families affected by NPC was compiled and distributed to the families
  • An informational pamphlet was written and mailed to hundreds of professionals and organizations in the medical field to create awareness of this rare disease.
  • Fundraising began to channel money into medical research.
  • A Scientific Advisory Board of doctors and researchers was established.
  • A paragraph was added to the Appropriations Bill for NIH to ensure continued funding for Niemann-Pick Disease research at the federal level.

1993 was another busy year. The Foundation name was changed to the National Niemann-Pick Disease Foundation, Inc., nonprofit status was awarded by the IRS, the first family conference was held, and the first research grant was awarded to Dr. Eugene Carstea to identify the genetic cause of NPC. Dr. Carstea announced the discovery of the NPC1 gene four years later.

All of these services have continued and expanded over the years.


  • The enewsletter goes out to over 6,000 households.
  • The NNPDF is a co-founder of the International Niemann-Pick Disease Alliance (INPDA)
  • The NNPDF also works collaboratively with the Canadian Chapter of the NNPDF for research
  • The Family Conference has grown 15-fold with separate sessions for Type B and Type C. Top researchers attend to interact with families and share their expertise.
  • The Web site was added in 1997, followed by email discussion lists (listservs).
  • A director of Family Services is available to assist families across the nation with medical issues.
  • Research grants have increased from $14,583 in the first year to nearly $400,000 per year, for a total of $5.6 million put into research to date.
  • NNPDF was a founding member of the Lysosomal Disease Research Consortium, which awards over $1,000,000 in related research grants annually.

The National Niemann-Pick Disease Foundation currently has over 450 Niemann-Pick families as members. Thousands of medical, corporate, professional, friend and family sponsors assist in supporting our goals through contributions and donations of services. NNPDF is the largest Niemann-Pick Disease family support organization in the world and one of the largest private funders of Niemann-Pick Disease research.

The NNPDF’s board continues to be comprised mainly of parents with children affected by NPD.  All board members donate their time to the NNPDF on a volunteer basis. Fundraising has increased tremendously with most of the money still being raised by NPD-affected families working in their local communities.

Of the six original families, five have lost a child to Niemann-Pick Disease. All six are still NNPDF members and one remains on the Board of Directors.