News:

The importance of patient group advocacy and support: CHPI

On February 6, 2015, Dr. Nigel Rawson, Ph.D., published an article in the journal of the Canadian Health Policy Institute which speaks to the importance of patient group advocacy and support, given today’s healthcare environment in Canada. He also speaks to the shortcomings of the Canadian drug approval and review processes when it comes to funding rare disease treatments. Patient support group aHUS Canada and their efforts to secure publicly-funded access to eculizumab, the same life-saving drug approved for the treatment of PNH, are detailed in the piece.

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POLL: Determining Interest in Toronto PNH Patient Meeting

The Canadian Association of PNH Patients is looking to gauge the interest of members of the PNH community from across the country in attending a group meeting for patients and their caregivers in Toronto this April.

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October 8, 2013

This week, the Canadian Association of PNH Patients’ president Barry Katsof sent an open letter to New Brunswick’s Minister of Health, Hugh Flemming, calling on the province to immediately implement its life-saving Catastrophic Drug Program. The letter came less than a week after the launch of PEI’s own plan on October 1, just under six months after it was announced.

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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. The letter can be downloaded here. Find the email address of your MNA here. If you would like to personalize your letter with a short testimonial, please feel free to do so. Other ways to raise awareness: Wear the I’M RARE badge on International Rare Disease Day Request that your doctor, hospital or convenience store display this poster Give or mail our brochure to your doctor and your other health professionals Ask your family, friends and colleagues to send the letter to their MNA

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