Guidance for living with PNH
Here’s where you’ll find materials that can help you or a loved one better manage PNH.
Videos
PNH education, from a PNH specialist
Rewrite your PNH Story
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