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Genetic and Rare Diseases Information Center (GARD)

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Other Names for this Disease
  • Neuroacanthocytosis syndrome
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

  • Advocacy for Neuroacanthocytosis Patients
    32 Launceston Place
    London W8 5RN
    United Kingdom
    Telephone: 020 7409 0092
    Fax: 020 7495 4245

  • American Dystonia Society
    17 Suffolk Lane, Suite 1
    Princeton Junction, NJ 08550
    Telephone: 310-237-5478

  • Mental Health America
    2000 N. Beauregard Street, 6th Floor
    Alexandria, VA 22311
    Toll-free: 800-969-6642
    Telephone: 703-684-7722
    Fax: Fax:1-703-684-5968

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.
  • RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support