Balancing young adulthood with a fatiguing rare disease
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 […]
Big Win for the PMPRB Community
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.
UPDATED: Canadian PNH Network Position Statement on COVID-19 Vaccination
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).
Join our private Canadian PNH Support Group on Facebook today!
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 […]
NEW THIS MONTH: Protect Our Access – Stopping Drug Regulatory Changes
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!
ADVOCACY UPDATE: NEW PMPRB REGULATIONS DELAYED UNTIL JULY 1, 2021
A Year-End Update: #stopPMPRBnow campaign + Upcoming Projects
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. […]