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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News

REGISTER TODAY: #stopPMPRBnow Campaign – How You Can Help Protect PNH Lives

The PNH community is extremely concerned about the proposed amendments to the Regulations governing the Patented Medicine Prices Review Board (PMPRB), set to come into effect on January 1, 2021. We know that PMPRB reform is already having a quantifiable, detrimental, if not deadly, impact on Canadian PNH patients by limiting access to an approved treatment option, clinical trials and global innovations in PNH therapies – all of which are helping to improve, extend and save the lives of PNH patients in other countries. We cannot accept that our lives are being put at risk by the uncertainty generated by the PMPRB reform process. Find out how you can help protect the lives of Canadians living with PNH and other rare diseases! On September 30, 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 Advocacy Solutions for our second free webinar to learn about:
  • 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!
To reserve your spot today, please visit: https://register.gotowebinar.com/register/3775856380312920334 The first 15 people to register and attend the webinar will receive a free 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. In case you missed our first webinar on September 10, or if you would like to re-watch the presentation, you can find the recording here: https://register.gotowebinar.com/recording/4088901634414258690?assets=true You can also find a PDF copy of the September 10 webinar slides here: http://www.pnhca.org/wp-content/uploads/PNHCA-PMPRB-Webinar-1-FINAL-for-presentation-10Sept20.pdf
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FIND A PNH SPECIALIST: View a list of board certified hematologists in your province