Paroxysmal Nocturnal Hemoglobinuria (PNH) Resources

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.

Download

Uncovering Hemolysis

Hemolysis can be complicated. This resource can help you understand hemolysis better.

Download

PNH 101 Guide

This brochure can help guide your understanding of your PNH diagnosis and prepare you for the journey ahead.

Download

¿Nuevo diagnóstico de PNH?

Este folleto puede ayudarle a comprender su diagnóstico de PNH y prepararse para lo que sigue.

Download

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.

Download

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.

Rewrite your PNH Story

Follow our PNH hero as they navigate symptoms, share experiences, and discuss management approaches with their doctor to ultimately become the author of their own story. Rewrite your PNH story today.

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.

Visit site

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to patients and their families living with rare diseases, including PNH.

Visit site

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.

Visit site

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.

Watch Brandi’s Personal Narrative of Hope

Learn from her inspiring story

PNH, paroxysmal nocturnal hemoglobinuria.