About us

The Canadian Association of PNH Patients is a not-for-profit Canadian organization formed in 2009. The mission of the organization is to connect Canadians affected by Paroxysmal Nocturnal Haemoglobinuria and advocate for the best possible care for patients and ensure they are equipped with the most current tools and information to help them live well with the condition. The organization also provides support to caregivers, and works to increase awareness and understanding of PNH.

Paroxysmal Nocturnal Haemoglobinuria (PNH) is a very rare and debilitating disease of the bone marrow that affects the blood and major organs. It is a chronic, life-threatening illness and can have devastating effects upon a patient physically, mentally and emotionally. This website represents a growing community of patients, caregivers and members of the medical community who wish to support and improve the quality of life of those with PNH.

The Association is generously supported by corporate and private donors, including unrestricted educational grants from Alexion Pharmaceuticals, Apellis Pharmaceuticals, and Ra Pharmaceuticals, Inc.

GET STARTED TODAY: Download for free and join the Anytime Access to PNH Health group!


COVID-19 for PNH Patients – Update #1

PNH Patients, 

Aplastic Anemia & MDS International Foundation has released a webinar for PNH patients regarding COVID-19. 

You can watch the free webinar by following this link: https://youtu.be/apMyOo7YSeA

For regularly updated information on COVID-19 from the Public Health Agency of Canada, please visit: https://www.canada.ca/…/d…/coronavirus-disease-covid-19.html


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FIND A PNH SPECIALIST: View a list of board certified hematologists in your province