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,
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.
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