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.
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!
- Highlights of webinar #1 – including how PMPRB Reform is already impacting PNH patients
- Introduction to the #stopPMPRBnow advocacy campaign
- How to use PNHCA’s e-Advocacy platform to #stopPMPRBnow
- 3-month countdown to change!
Read stories from patients within the Canadian PNH community.