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Links and Other Resources

Links and Other Resources


Research Participation and Clinical Trials

Clinical Trials

NPD Type C Family Survey conducted by graduate nursing student Karen Quandt


Donation of Biological Samples to Assist with Research

Many families ask what they can do to help move research forward more quickly. One, of course, is to raise funds – research is expensive and every little bit helps! Another important way to help, however, and one that only the patients and families can do, is to donate biological samples for use in the research studies. This might include blood or skin cell samples taken at the time of diagnosis or other medical procedures, or blood, skin cell and tissue samples taken at the time of a surgery or at time of death.

The National Niemann-Pick Disease Foundation has worked with several programs and organizations where donations will be accepted, depending upon which type of NPD affects the donor. Please select one of the following links to learn more about how to arrange a donation and review the documents that will need to be completed to allow for sample collection.

Thank you for considering this most generous of donations!

Niemann-Pick Disease, Types A and B/Acid Sphingomyelinase Deficiency

  1. Coriell Institute for Medical Research
  2. The Laboratory of Dr. Edward Schuchman at Mt. Sinai School of Medicine

Niemann-Pick Disease, Type C

  1. Coriell Institute for Medical Research
  2. University of Maryland Brain and Tissue Bank for Developmental Disorders

Stem Cell Information from the International Society for Stem Cell Research

There has been much recent discussion among members of the NNPDF about stem cell therapies for lysosomal storage disease. While this should not be seen as an endorsement of this approach to disease management at this time, it is important that we provide our members with unbiased information about developing technologies. The following link provides access to both basic and more in-depth information about this field of investigation:

International Society for Stem Cell Research


Resources for NPD Families

  • Family Voices
  • CaringBridge
  • Ducks for Bucks – If you are a family who has a child with NPD, you qualify for help from Ducks for Bucks. Your need may be as simple as travel expenses for out-of-town doctor visits, to equipment and medical needs for the care of your NPD child. Whatever it is, Ducks for Bucks will do its best to help through the generosity of donors. Contact Lisa Chavez at lisa@ducksforbucks.org to discuss what help you are in need of and how Ducks for Bucks might be able to help.
    Ducks for Bucks Application Letter | Ducks for Bucks Application Letter
  • National Patient Travel Center – Dedicated to helping patients and their families in need of travel for medical reasons.

Research Centers

National Institutes of Health (NIH)

U.S. Department of Health and Human Services

NIH National Institute of Neurological Disorders and Stroke (NINDS)

NIH Office of Rare Diseases

National Library of Medicine

Organizations addressing other lysosomal storage diseases

Rare Disease Organizations


Other organizations that address Niemann-Pick Disease:

(See also our International Links and Information Page)