News:

June 18, 2013

Several months after the Canadian Association of PNH Patients’ initial visit to the New Brunswick legislature, the issue of the province’s promised catastrophic drug program continues to weigh heavily on the minds of the PNH community.

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March 1, 2013

This past Wednesday, February 27, the Canadian Organization for Rare Disorders held their Rare Disease Day Awards Gala Celebration. The Canadian Association of PNH Patients is happy to report that our founder and president, Barry Katsof, was recognized as a rare hero for his contributions to the rare disease community in Canada.

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February 27, 2013

February 28, 2013 is International Rare Disease Day, and Canadians with rare conditions are speaking up to bring awareness to the challenges members of this community face. In particular, patients living in New Brunswick are raising their voices, as it is one of only two provinces without a provincial catastrophic drug program. 

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February 7, 2013

On 21 February, the RQMO (Quebec Coalition of Orphan Diseases) Awareness Day will take place at the Quebec National Assembly as part of Rare Disease Day (February 28). The RQMO invites you to send a letter to your MNA to ask that he or she comes to meet the group.

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