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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

PNH Support Group



The PNH Support Group is an Internet-based support group for patients and families affected by paroxysmal nocturnal hemoglobinuria (PNH), a rare, acquired (non-genetically transmitted), chronic disorder characterized by a decreased number of red blood cells (anemia) and the presence of blood in the urine (hemoglobinuria) and plasma (hemoglobinemia), which is evident after sleeping. This disorder is associated with a heightened risk for blood clots (thrombosis), most commonly in large intra-abdominal veins. Participants in this support group share information regarding medications, bone marrow transplants, and other topics related to living with this disorder.

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