We're a Canadian non-profit organization dedicated to empowering people with PNH to live their best lives.
On this page
Our mission
The Canadian Association of PNH Patients (PNHCA) is on a mission to make a difference in the lives of people living with paroxysmal nocturnal hemoglobinuria (PNH) through advocacy, education, resources and support to help them rise above the challenges of their disease and experience the best quality of life possible.
Our story
In 2009, the Canadian Association of PNH Patients was founded by Barry Katsof, a PNH patient who saw an opportunity to create something meaningful out of a gap he experienced in his own PNH journey: a space where people and families living with PNH could learn and connect with others facing the same diagnosis. Over the years since, through his own diligence and persistence, Barry continued to be the squeaky wheel in the fight for access to better treatments. Today, as the president of the Canadian Association of PNH Patients, Barry continues to strive for a better future for the PNH community and empower those living with the disease to live the life they deserve.
Our goals
Connecting people from across the country to build a strong community of patients, caregivers and healthcare professionals
Advocating for financial coverage nationwide for the first treatment for PNH, which helped pave the way for future treatment access
Providing patients in remote locations with access to more treatment opportunities
Related topics
About PNH
Learn about the science of PNH, signs and symptoms and treatment options.
Better Living with PNH
Discover a holistic approach to improving your wellbeing with the Better Living with PNH Guide!
Find a PNH Specialist near you
Search by province or territory to locate clinics and specialists experienced in PNH.