Important Conversations: A PNH Shared Decision Making Toolkit

Welcome to A Shared-Decision Making Toolkit for Medical Professionals and People Living with Paroxysmal Nocturnal Hemoglobinuria (PNH)

How to Use This Toolkit
This toolkit is intended to support people living with Paroxysmal Nocturnal Hemoglobinuria (PNH) through their journey after receiving a diagnosis, foster better communication with healthcare providers, and provide an understanding of PNH and its impact on quality of life. Improved awareness of PNH and the barriers to care will help improve access to the treatments and medicines that people need – radically improving the trajectory of people living with the disease. 

Topics covered include:
– Understanding Your Diagnosis
– Confirming Your Diagnosis
– Taking an Active Role in Your Treatment Plan
– Living with PNH
– For Medical Professionals

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Where can I find additional support for my illness?
If you or a loved one has PNH, finding reliable information and support can make a big difference. Below, you will find a list of trusted resources to learn more about PNH, explore treatment options, and connect with support groups. These organizations provide helpful tools, expert guidance, and community support to help you or your loved one navigate life with PNH.

Aplastic Anemia and MDS International Foundation (AAMDSIF)
National Organization for Rare Disorders (NORD)
Everylife Foundation
The Assistance Fund

Other Support Opportunities:
– Patient Advocacy Network
– Individual drug manufacturers
– Facebook support groups

Acknowledgements
This work was made possible through a dedicated group of people impacted by PNH, patient advocates, and medical professionals who served on the PNH Shared Decision-Making Steering Committee. We thank them for their important and invaluable contributions to this work.