The Canadian Association of PNH Patients

On March 22, the Honourable Jean-Yves Duclos, Minister of Health, announced a new strategy to improve access to affordable and effective drugs for Canadians with rare diseases. The new measures will increase access to, and the affordability of, effective drugs for rare diseases, marked by an investment of up to $1.5 billion across three years. It is highly welcome news for those living with a rare disease, including Paroxysmal Nocturnal Haemoglobinuria (PNH), and their support systems. In Canada, one out of every 12 people has a rare disease, and the effects of these diagnoses are felt not only among patients

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