PNH Toolkit

Paroxysmal nocturnal hemoglobinuria (PNH) is challenging for both health care providers and patients to understand and explain. It can be overwhelming to be faced with the diagnosis of a rare disease like PNH, so it’s important to have clear descriptions of the disease information you need wherever you are in your PNH journey.

The resources in this toolkit will help you learn more about all aspects of PNH and manage your health care. There are printable patient information pages about disease basics, treatment options, managing side effects, and preparing for your medical appointments.

In addition, there are printable forms you can use to keep track of your treatment information and medical care – these include a symptom tracker, a medical appointment record, a blood transfusion record, and a chart for your health care team.

There are also short videos about PNH and links to many other AAMDSIF resources like webinars, booklets and fact sheets, a Map of Specialists and other informative content.

If you are a patient, you can select which of the PNH toolkit resources are most useful for you as well as for your caregivers and loved ones. You can also order a 3-ring binder that includes all of the patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to PNH.

If you are a health care provider, you can print out the information sheets and share the other toolkit resources you think would be best for your PNH patients based on their diagnosis and where they are in their treatment journey. You can also order a “starter kit” in an expandable file folder that includes multiple copies of all patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to PNH.