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Genetic and Rare Diseases Information Center (GARD)

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Paroxysmal nocturnal hemoglobinuria

Other Names for this Disease
  • Marchiafava-Micheli disease
  • PNH
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Organizations Supporting this Disease

  • Aplastic Anemia & MDS International Foundation, Inc.
    100 Park Avenue, Suite 108
    Rockville, MD 20850
    Toll-free: (800) 747-2820
    Telephone: (301) 279-7202
    Fax: (301) 279-7205

  • European Network for Rare and Congenital Anaemias (ENERCA)
    University of Barcelona
    Red Cell Pathology Unit
    C/Villarroel, 170 · 08036
    Telephone: (34) 93 451 5950
    Fax: (34) 93 227 1764

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