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Make a mark on the future of PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. https://pnh.iamrare.org/ | Aplastic Anemia and MDS International Foundation
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Make a mark on the future of PNH research by enrolling in the Globa…
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Every patient’s story and experience are a unique, invaluable part of a disease’s natural history. Log on to your profile in the Global PNH Patient Registry to share your experience with paroxysmal nocturnal hemoglobinuria: https://pnh.iamrare.org/ | National Organization for Rare Disorders, Inc. (NORD)
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Here is a new webinar recording! Extravascular Hemolysis in PNH was presented by Dr. Taha Bat. Watch the recording here: https://www.aamds.org/webinar/extravascular-hemolysis-and-pnh-2023-dallas-patient-and-family-conference #PNH #marrowfailure | Aplastic Anemia and MDS International Foundation
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Why join? "To help others with PNH. I have had it for so long and so much has changed since I was diagnosed, and we need to be moving in that direction. The direction of finding a cure or at least a cost-effective way to treat the disease that is easy on the patient and improves their quality of life to the fullest." Watch the short video to find out more: https://www.aamds.org/sponsored-research/global-pnh-patient-registry | Aplastic Anemia and MDS International Foundation
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