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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, BioCryst, Regeneron, SOBI, Novartis and Roche.

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

News

Balancing young adulthood with a fatiguing rare disease

Olivia Oliverio, a young professional and dancer, has spent over a decade dealing with the exhausting and life-threatening effects of a rare blood disorder called PNH. This is her story. I’m only 26 years old and I’ve been dealing with bone marrow disease for over 12 years. It started with aplastic anemia, so my bone marrow just wasn’t producing enough blood cells. It was extremely difficult as a 14-year-old to deal with the physicality of being so extremely tired from low hemoglobin levels. But even more challenging than that was the mental burden, coming to grips with what having a

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Big Win for the PMPRB Community

A statement from the Minister of Health outlined a big win for the PMPRB community. 2 of the 3 proposed changes were removed by the Health Minister and only the comparative countries were changed.

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Patient Stories

Read stories from patients within the Canadian PNH community.