PNH Patient Registry

We are pleased to announce the launch of the Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry in Spanish! The Global PNH Patient Registry creates a platform for patients around the world to strengthen their voices and share information about PNH. Designed with the input of scientists and patients, this global resource will provide data for researchers to better understand how PNH affects patients. Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. Join now and let your data tell your story!

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The Aplastic Anemia and MDS International Foundation (AAMDSIF) is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. AAMDSIF Programs and Services include: patient and family conferences, webinars, patient education materials in print and digital formats, and patient support groups. For resources, support, and information about AAMDSIF’s upcoming events, visit our website.

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We are pleased to announce the relaunch of the Global PNH Patient Registry on NORD’s IAMRARE® Program! The Global PNH Patient Registry creates a platform for patients around the world to strengthen their voices and share information about PNH. Designed with the input of scientists and patients, this global resource will provide data for researchers to better understand how PNH affects patients. Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. Join now and let your data tell your story!

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