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.
Downloadable pages about disease basics, treatment options, side effect management, special precautions, and communicating with your health care team.
What is PNH?
Basic description of PNH and how it affects your bone marrow and blood
Understanding the Symptoms of PNH
Review of the range of PNH symptoms based on low blood counts
Treatment for PNH
Summary of FDA-approved medicines for treating PNH and transplantation options
Special Precautions for PNH
Patients PNH patients need to take a few special precautions
Managing Side Effects of Treatment
Summary of the common side effects of PNH treatments and tips for managing them
Preparing for Medical Visits
Guidelines and suggested questions for making the most of your health care appointments
Forms you can use to keep track of your treatment information and medical care.
Form to record health care visits and notes
My Healthcare Team
Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care
Platelet Transfusion Record
Form to keep track of platelet transfusions as part of PNH treatment
Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
Blood Transfusion Record
Form to keep track of blood transfusions as part of PNH treatment
This 3-ring binder includes all PNH Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles. Order the complete PNH Toolkit for Patients on our Request Educational Materials page »
This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their PNH journey. Order the complete PNH Toolkit for Health Care Providers on our Request Educational Materials page »
PNH Patient Guides and Fact Sheets
Free educational booklets and fact sheets which can be downloaded or ordered for
PNH Disease Information
AMDSIF website information includes PNH causes, symptoms, diagnosis, types and treatments.
Global PNH Patient Registry
Learn more about the registry on the AAMDSIF website
AAMDSIF Webinars on PNH
Links to upcoming and on-demand webinars on PNH and related topics
AAMDSIF Podcasts on PNH
Listen to interviews with leading PNH experts
AAMDSIF Hybrid Patient and Family Conferences
Learn from leading experts around the world about PNH
Find a Specialist
Interactive world map for finding PNH specialists
AAMDSIF PNH Patient Travel Assistance Fund
AAMDSIF grant to consult with a PNH Specialist
Comprehensive list of resources for various types of support