On March 22, the Honourable Jean-Yves Duclos, Minister of Health, announced a new strategy to improve access to affordable and effective drugs for Canadians with rare diseases. The new measures will increase access to, and the affordability of, effective drugs for rare diseases, marked by an investment of up to $1.5 billion across three years. […]
Olivia Oliverio, a young professional and dancer, has spent over a decade dealing with the exhausting and life-threatening effects of a rare blood disorder called PNH. This is her story. I’m only 26 years old and I’ve been dealing with bone marrow disease for over 12 years. It started with aplastic anemia, so my bone […]
A statement from the Minister of Health outlined a big win for the PMPRB community. 2 of the 3 proposed changes were removed by the Health Minister and only the comparative countries were changed.
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.
As we wrap up a year that has brought many unprecedented challenges to Canadians, and especially those already facing health challenges, we are also coming to the end of our hard-fought campaign against reforms to drug pricing in Canada. Thank you to so many within our PNH family and extended families for participating in the #stopPMPRBnow advocacy campaign. […]