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 and Ra Pharmaceuticals, Inc.
Canada’s drug review and reimbursement systems are onerous, duplicative, and inadequate. It can take between two to five years for some drugs to get to patients and even longer for precision medicines and medicines for rare diseases. Right now, only 60 per cent of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe. This month, the Canadian Association of PNH Patients and other patient organizations across Canada are advocating for the millions of patients across Canada whose lives depend on medical breakthroughs.
The Canadian PNH Network – a nationwide network of experts dedicated to the diagnosis, treatment, management, education and investigation of PNH for the benefit of Canadian patients and the Canadian healthcare system – recently issued a position statement regarding COVID-19 vaccination (see below). For more information, visit the Canadian PNH Network’s website.
Read stories from patients within the Canadian PNH community.