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.
Our message was heard! On December 30, 2020 – just two days before the new PMPRB Guidelines were due to come into force – the Government of Canada advised stakeholders that implementation of the amended Patented Medicines Regulations has been further delayed until July 1, 2021, in order to focus attention on COVID-19. The Canadian Association of PNH Patients worked tirelessly in 2020 to ensure the new PMPRB guidelines would not impede PNH patients’ access to medicines and clinical trials. We are relieved the government took the right action to delay implementation. We are grateful to everyone who supported the #stopPMPRBnow campaign! In case you missed them, you can watch below some of the media interviews we did leading up to the decision to delay: CTV’s Your Morning Global News Montreal Montreal Gazette CTV News Calgary Danielle Smith Show 770 CHQR Radio Calgary (Start listening at 39:46) We will keep you posted as we…
As we wrap up a year that has brought many unprecedented challenges to Canadians, and especially those already facing health challenges, we are also coming to the end of our hard-fought campaign against reforms to drug pricing in Canada. Thank you to so many within our PNH family and extended families for participating in the #stopPMPRBnow advocacy campaign. With your help, we’ve engaged with 172 federal and provincial government decision makers, federal representatives and party leaders more than 30,000 times through email, Facebook, Twitter and the news media. Without a doubt, our voices were heard! Here are some of the recent news stories featuring two brave PNH advocates: CTV’s Your Morning Global News Montreal Montreal Gazette CTV News Calgary Danielle Smith Show 770 CHQR Radio Calgary (Start listening at 39:46) We knew from the start that it would be an uphill battle against PMPRB reform to ensure that those living with PNH and other rare diseases…
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!