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PNH Support Group

Address

http://www.pnhdisease.org

Website

http://www.pnhdisease.org/

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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