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
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.