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 an updated position statement regarding COVID-19 vaccination (see below). Download PDF: PNH COVID-19 Vaccination Position Statement Update – May 2021 For more information, visit the Canadian PNH Network’s website.
The Canadian PNH Support Group is a closed group that is managed by the Canadian Association of PNH Patients, which contains information for PNH patients and caregivers only, and exists to facilitate dialogue between members of the Canadian PNH community. Please feel free to share your thoughts, experiences and stories, as well as engage in discussion with other members. If you are interested in joining, please submit a request to become a member of this group. To ensure that this is a safe, private space for sharing, we require that you answer a few questions that will be sent to you via a private Facebook message. Please note that only Canadian PNH patients and their caregivers will be accepted. Anyone who has been blocked from any other closed Facebook groups will not be accepted. We look forward to welcoming you to our group!
Read stories from patients within the Canadian PNH community.