The Canadian PNH Network – a nationwide network of experts dedicated to the diagnosis, treatment, management, education and investigation of PNH for the benefit of Canadian patients and the Canadian healthcare system – recently issued an updated position statement regarding COVID-19 vaccination (see below).
The Canadian PNH Support Group is a closed group that is managed by the Canadian Association of PNH Patients, which contains information for PNH patients and caregivers only, and exists to facilitate dialogue between members of the Canadian PNH community. Please feel free to share your thoughts, experiences and stories, as well as engage in […]
Canada’s drug review and reimbursement systems are onerous, duplicative, and inadequate. It can take between two to five years for some drugs to get to patients and even longer for precision medicines and medicines for rare diseases. Right now, only 60 per cent of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe.
This month, the Canadian Association of PNH Patients and other patient organizations across Canada are advocating for the millions of patients across Canada whose lives depend on medical breakthroughs.
PMPRB Advocacy Update – Open Letter to Prime Minister Justin Trudeau & other decision makers urging them to put our lives first!
NEWS RELEASE: Federal Government Must Delay Drug Pricing Reform to Safeguard Patient Lives During COVID-19
My name is Olivia Oliverio and I am a 24-year-old from Calgary, Alberta. I graduated in 2018 from the Southern Alberta Institute of Technology (SAIT) with a Bachelor’s in Business Administration, majoring in accounting. Although my love for numbers has led me to my current occupation as an accountant at an accounting firm in Calgary, my […]