Guidance for living with PNH
Here’s where you’ll find materials that can help you or a loved one better manage PNH.
Downloads for you
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 101 Guide
This brochure can help guide your understanding of your PNH diagnosis and prepare you for the journey ahead.
¿Nuevo diagnóstico de PNH?
Este folleto puede ayudarle a comprender su diagnóstico de PNH y prepararse para lo que sigue.
Living with PNH Resource Guide
Have questions about PNH? Start here! The Living with PNH Resource Guide features real patients providing real answers to common questions in their own words.
Videos
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
Here’s a list of some advocacy groups that can offer you help and guidance:
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.
The organizations and websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy or any other aspect of the information supplied by these organizations or contained on these websites.
