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.
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.
PMPRB Advocacy Update – Open Letter to Prime Minister Justin Trudeau & other decision makers urging them to put our lives first!
Following our successful advocacy campaign during the last three months of 2020 which led to a six-month delay in implementation of the new PMPRB Regulations – now set to come into force on July 1, 2021 – we promised you we would keep our eyes on this important issue. While our campaign was underway, we saw that the pharmaceutical industry put forward an “alternate plan” to the federal government that aims to ensure Canadians continue to have access to new medicines, while generating more than $20 billion in savings on drug prices over 10 years. However, we have not read or heard anything further from government regarding the industry’s proposal. As part of our ongoing advocacy efforts, PNH Canada has submitted a letter (see below) urging the federal government to use the remaining five months to work collaboratively and in good faith with the pharmaceutical industry and find a path…
Read stories from patients within the Canadian PNH community.
FREE APP! Manage your PNH journey from anywhere in the world with Backpack Health.The Canadian Association of PNH Patients has partnered with Backpack Health, LLC to provide a free, secure health data management platform to help individuals, families and caregivers in the PNH community manage their medical information and gain better access to patient-specific resources. The Backpack Health platform will also serve as the first patient-led disease registry in PNH anywhere in the world contributing to important research advances. Learn more about the Anytime Access to PNH Health group today!