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What’s Happening

The Guide to Living Well with PNH has been updated to include information on the latest news in PNH research, navigating the complexities of accessing treatment through clinical trials, traveling with PNH, and more! Please »read more

Alexion Pharmaceuticals, a clinical stage biopharmaceutical company focusing on the development of life-transforming therapies for patients with devastating and rare diseases, recently announced positive results from a phase 3 »read more

Ra Pharmaceuticals, a clinical stage biopharmaceutical company focusing on the development of next-generation therapeutics for complement-mediated diseases, recently announced interim results from their ongoing, global Phase 2 »read more

This post is for all patients living in Ontario who might be affected by the new OHIP+: Children and Youth Pharmacare Program. Beginning January 1, 2018, all children and youth 24 years of age or younger in Ontario will be »read more

Rare Blood Disorders Supplement Barry Katsof, president of the Canadian Association of PNH Patients, recently contributed to a rare blood disorders supplement that ran in print in Maclean’s Magazine, as well as online at »read more

Drug Approval and Funding Process in Canada If you think that deciphering how prescription medicines are approved and funded in Canada is akin to learning a new language, you’re right. It incorporates a combination of »read more

You are invited to join the Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) at their upcoming Patient Education Day in Vancouver, British Columbia on Saturday, September 30, 2017. The purpose of this free »read more

In the fall of 2016, the Patented Medicine Prices Review Board (PMPRB) requested input from stakeholders and interested members of the public on the PMPRB Guidelines, to ensure they remain a relevant and effective tool for »read more

Travelling with PNH? New travel protocol now available! If you have PNH, it is important to plan ahead for any upcoming travel – be it for work, holidays or personal reasons. Apart from the usual things to think about when »read more

Over the past month, the Canadian Association of PNH Patients (PNHCA) has been working hard to share the story of Konrad Krzeminski, a 20-year-old PNH patient living in Poland who requires urgent publicly funded access to the »read more