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.
On November 6, PNH Canada submitted a brief to the House of Commons Standing Committee on Health (HESA) to inform the study it is undertaking on the Final Guidelines issued by the Patented Medicine Prices Review Board (PMPRB) on October 23, 2020. Our submission included two powerful testimonials from Canadian PNH patients. We made our position clear – we are extremely concerned that the new guidelines will limit access to new and innovative treatments, clinical trials and other global innovations in medicine for Canadian patients living with PNH and other rare diseases. We also provided evidence on how these reforms are already having a quantifiable and detrimental, if not deadly, impact on our lives. PNH Canada has requested to appear before the HESA committee and looks forward to the opportunity to make our community’s voice heard on this important issue for all Canadians! Read our full submission here Click here…
On October 1, 2020, the Canadian Association of PNH Patients officially launched its #stopPMPRBnow advocacy campaign due to concerns regarding the proposed amendments to the Regulations governing the Patented Medicine Prices Review Board (PMPRB) set to come into effect on January 1, 2021 Those living with rare diseases – including PNH – cannot accept that lives continue to be put at risk by the uncertainty generated by the PMPRB reform process to date. Join our #stopPMPRBnow campaign to urge the federal government to put a stop to the proposed PMPRB reform until we can be certain that the lives of Canadians won’t be put at further and unnecessary risk. To find out how you can get involved and make your voice heard to #stopPMPRBnow, contact us at email@example.com or click here to take action!
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!