News:

What’s New in Research

Every year, hundreds of new clinical trials are initiated to test new “experimental” drugs, or to test new uses of already approved drugs on humans, in a wide range of disease areas. These trials are conducted by researchers in countries all around the world, including Canada, in locations like hospitals, universities, doctors' offices, and community clinics. Through voluntary participation in clinical trials, patients get a chance to take part in research that could improve their health and help them access a drug, prior to its approval. Like all drugs, the ones used in clinical trials have potential benefits as well as risks, and since they are still being studied, there is usually limited information about safety and efficacy. Before deciding to take part in a clinical trial, discuss the potential risks and benefits with your health care provider, so that you can make an informed decision about your health.

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PMPRB Update

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 protecting consumers from high drug prices in a dynamic and evolving pharmaceutical market.  In response, the Canadian Association of PNH Patients (PNHCA) provided a submission and it was included in the PMPRB Guidelines Modernization Discussion Paper, which is now available on the PMRPB website. PMPRB received 66 submissions representing more than 500 different organizations, including patient groups, provincial health authorities, academics, private insurers, patentees, health professionals, employers, unions, and advocacy groups.

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PNH – Travel Protocol

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 travelling, having PNH means you also need to consider: Your current health; Any health needs you may have while travelling; and Steps you can take to avoid becoming ill while you’re away. Even if you’ve successfully travelled in the past, things can change over time, and you must talk to your doctor as soon as you start thinking about taking a trip. To help you plan for any upcoming travel, the Canadian Association of PNH Patients has developed a travel protocol for PNH patients who are currently being treated with eculizumab. If you will need to be infused while travelling, this protocol should be followed to help ensure you have…

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UPDATE: PNH Patient in Poland

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 life-saving treatment, eculizumab. PNHCA has been advocating to the Minister of Health in Poland on behalf of Konrad and his family, and assisting them to tell their story through the Polish media and over Facebook where we reached more than 14,000 people worldwide.

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UPDATE: PNH patient in Poland

Konrad Krzeminski is a 20-year-old PNH patient living in Poland who requires urgent access to the life-saving treatment, eculizumab. Konrad’s relatives in France discovered the Canadian Association of PNH Patients’ website and reached out, looking for support. Since then, PNHCA has been providing advocacy support to Konrad and his family in a variety of ways.

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PARTICIPATION REQUESTED: PNH Patient Survey

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 of PNH Patients has been asked to contact patients across the country to respond to this survey.

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NEW STUDY: Eculizumab in Pregnant Patients with PNH

The New England Journal of Medicine (NEJM) recently published a study focusing on the use of Soliris (eculizumab) in pregnant patients with paroxysmal nocturnal hemoglobinuria (PNH).

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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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