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The Guide to Living Well with PNH

NEW! The Guide to Living Well with PNH has been updated!

The Guide to Living Well with PNH contains patient quotes, expert tips, and tools to help patients and caregivers not only better manage this condition, but thrive with it. We have updated this “go-to” resource to include information on the latest news in PNH research, navigating the complexities of accessing treatment through clinical trials, traveling with PNH, and more.

Now in its second edition, The Guide to Living Well with PNH was developed by the Canadian Association of PNH Patients with contributions from patients and physicians within the Canadian PNH community to give patients the most up-to-date information on managing their disease, and help them transition to a new, healthier chapter of their lives.

Special thanks to PNH expert Dr. Christopher Patriquin whose valuable insights helped inform this edition of The Guide, and to Apellis Pharmaceuticals and Ra Pharmaceuticals for their support to update this important resource!

To download a copy of The Guide to Living Well with PNH, please click below:

ENGLISH
FRENCH

To request a hard copy (or copies), please send an email to guide@pnhca.org.

PLEASE NOTE:

The information contained in The Guide to Living Well with PNH  is intended for general knowledge only and is not to be substituted for medical advice. Please consult with your medical practitioner for further information regarding your personal circumstances.

This information has been prepared by the Canadian Association of PNH Patients, and is copyright protected.