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The Canadian Association of PNH Patients is thrilled to announce the launch of the Guide to Living Well with PNH! This important resource, developed by the Canadian Association of PNH Patients, is now available in digital and print formats. Our association would like to sincerely thank the members of the Canadian PNH community (including patients, families, physicians and nurses) for their many contributions to this one-of-a-kind »read more

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Travelling with PNH? New travel protocol now available! If you have PNH, it is important to plan ahead for any upcoming travel – be it for work, holidays or personal reasons. Apart from the usual things to think about when »read more


Over the past month, the Canadian Association of PNH Patients (PNHCA) has been working hard to share the story of Konrad Krzeminski, a 20-year-old PNH patient living in Poland who requires urgent publicly funded access to the »read more

The Patient Journey

Garrett Shakespeare

Garrett Shakespeare was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) 15 years ago. Now 26, this rare and deadly disease took its toll on his body and major organs for more than half of his young life. Once an avid »read more

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Questions about PNH commonly asked by patients and caregivers will be answered by a leading PNH expert. Click here to see the list of questions. To submit your own question, fill out our form, or send an email to