Guidance for living with PNH
Here’s where you’ll find materials that can help you or a loved one better manage your PNH.
Downloads
PNH Appointment Guide
An easy-to-use guide to help you reflect on your PNH, think about future goals, and get the most out of doctor appointments.
Uncovering Hemolysis
Hemolysis can be complicated. This resource can help you understand hemolysis better.
PNH education, from a PNH specialist
Gain a deeper understanding of PNH with Dr Jamile Shammo, a hematologist and PNH specialist. In this video, Dr Shammo discusses the reasons behind symptoms, the importance of tracking symptoms, and tips for productive doctor visits.
Patient Advocacy Groups
Resources from these advocacy groups are for educational purposes only and do not imply an endorsement of any kind by them.
Aplastic Anemia and MDS International Foundation (AAMDSIF)
The AAMDSIF is the world's leading nonprofit health organization dedicated to patients and their families living with blood and bone marrow conditions, including PNH.
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedicated to patients and their families living with rare diseases, including PNH.
PNH Global Alliance
This is a group of global organizations dedicated to sharing information, collaborating on challenges, and leveraging voices for the benefit of the PNH community.
Watch Brandi's Personal Narrative of Hope
PNH, paroxysmal nocturnal hemoglobinuria.