Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.


Genetic and Rare Diseases Information Center (GARD)

Print friendly version

Niemann-Pick disease type C1

Other Names for this Disease
  • Neurovisceral storage disease with vertical supranuclear ophthalmoplegia
  • Niemann-Pick disease with cholesterol esterification block
  • Niemann-Pick disease, chronic neuronopathic form
  • Niemann-Pick disease, subacute juvenile form
  • Niemann-Pick disease, type C
More Names
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Organizations Supporting this Disease

  • Children Living with Inherited Metabolic Diseases (CLIMB)
    Climb Building
    176 Nantwich Road
    Crewe CW2 6BG
    United Kingdom
    Telephone: 0800 652 3181 (toll free)

  • Hide and Seek Foundation for Lysosomal Storage Disease Research
    4123 Lankershim Boulevard
    6475 East Pacific Coast Highway
    Suite 466
    Long Beach, CA 90803
    Telephone: 877-621-1122
    Fax: 866-215-8850

  • National Niemann-Pick Disease Foundation, Inc.
    P.O. Box 49
    401 Madison Avenue, Suite B
    Ft. Atkinson, WI 53538
    Toll-free: 877-CURE-NPC (287-3672)
    Telephone: 920-563-0930
    Fax: 920-563-0931

  • National Tay-Sachs and Allied Diseases Association
    2001 Beacon Street
    Suite 204
    Brighton, MA 02135
    Toll-free: 800-90-NTSAD (906-8723)
    Telephone: 617-277-4463
    Fax: 617-277-0134

Social Networking Websites

  • is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support