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

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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.

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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,

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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.

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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

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