About us

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, and Ra Pharmaceuticals, Inc.

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REGISTER TODAY: Why drug pricing reform in Canada must be stopped to protect PNH patients New federal regulations governing the Patented Medicine Prices Review Board (PMPRB) and the regulation of drug prices in Canada will come into effect on January 1, 2021. On August 4, 2020, the Canadian Association of PNH Patients made a submission in response to the consultation currently underway regarding proposed amendments to the Regulations governing the PMPRB. Despite the most recent changes, as reflected in the June 2020 Draft Guidelines, we remain concerned that the health of Canadians living with PNH continues to be put at risk by the uncertainty generated by the PMPRB reform process to date. On September 10, 2020 at 12:00 p.m. EDT, please join the Canadian Association of PNH Patients and our presenters, Barry Katsof, Founder & President, Canadian Association of PNH Patients and Joanne Koskie, Managing Director, Advocacy Solutions for a free webinar, to learn more about:
  • PMPRB and the proposed changes to drug pricing regulations
  • The impact and implications of the proposed changes on PNH patients
  • The submission made by the Canadian Association of PNH Patients to PMPRB regarding the proposed changes
  • How the PNH community can engage at this stage of regulatory reform to bring about change
To reserve your spot today, please visit: https://attendee.gotowebinar.com/register/4572697745267231760 The first 15 people to register and attend the webinar will receive a complimentary bracelet from Beacon of Hope, a company run by the Maciesza family, strong advocates for the PNH community in Canada. Note: This webinar is available in English only.
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FIND A PNH SPECIALIST: View a list of board certified hematologists in your province