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What's Happening »view all

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

PNH in the News »view all

As the issue of a catastrophic drug program heats up in New Brunswick, Mark Brennan, a PNH patient in Saint John, has been pushing hard for access to Soliris. Mark’s story has received some media attention in the province »read more

As a result of the Canadian Association of PNH Patients statement responding to Health Canada’s rare disease framework announcement, Association president Barry Katsof was quoted in a Canadian Press story on the subject. The »read more

For Media »view all

Press Releases July 27, 2011 Fight against PNH: Quebec among few remaining jurisdictions not listing Soliris on public drug insurance plan July 23, 2011 Governments agree to fund life-saving treatment for rare, fatal blood »read more

News

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

Konrad Krzeminski is a 20-year-old PNH patient living in Poland who requires urgent access to the life-saving treatment, Soliris (eculizumab). Konrad’s relatives in France discovered the Canadian Association of PNH »read more

INVITATION - Montreal Patient and Caregiver Meeting We are pleased to formally invite you to our next meeting for patients and caregivers who are located in Quebec and Atlantic Canada, on Saturday, September 24, 2016 in »read more

You are invited to join the Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) at their upcoming Patient Education Day in Moncton, New Brunswick on Saturday, October 15, 2016. The purpose of this free event is to »read more

SAVE THE DATE! The Canadian Association of PNH Patients invites the Canadian community of patients and caregivers to join us at our upcoming meeting on Saturday, September 24, 2016 in Montreal. We are pleased to announce that »read more

You are invited to join the Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) at their upcoming Ontario Patient Support Group Meeting in Toronto, Ontario on Saturday, April 2, 2016. This free event will include »read more

The Aplastic Anemia & MDS International Foundation (AAMDSIF) is offering seven FREE patient and family conferences in 2016, taking place Washington, DC; Cincinnati, OH; Seattle, WA; Raleigh, NC; San Diego; San Antonio »read more

A company that is developing a new treatment for PNH has created an online patient survey to help the company better understand the experiences, perspectives, and unmet needs of Canadian PNH patients. The Canadian Association »read more