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Montréal: the ideal venue for the XXXIV World Congress of the World Federation of Hemophilia in 2020

As you may know, the Canadian Hemophilia Society (CHS) is one of the two finalists to host the XXXIV World Congress of the WFH in Montréal in 2020. A final decision will be made by the General Assembly of the World Federation of Hemophilia in Melbourne on May 16.

As one of the founding members of the WFH and a leading country in the care and treatment of people with inherited bleeding disorders, we are confident that the proposed Scientific Program would reach and even surpass the level of excellence expected from a WFH Congress.

A campaign for our bid was launched last week when a promotional flyer was sent by e-mail to all the National Member Organizations of the WFH inviting them to vote for Montréal on May 16.

Click here for the flyer.

A short promotional video has also been posted on YouTube. Click here to view it.

Promotional flyer in Spanish

Canadian landmarks lit up in red for World Hemophilia Day

Langevin Bridge, Calgary, AB
Photo: Jason Dziver

Niagara Falls, ON
Photo: Bobb Barratt

CN Tower, Toronto, ON
Photo: VIDpicta

Invitation to patients with an inhibitor to participate in market research study

HealthPulse, a Canadian market research and consultancy company, is currently looking for patients with hemophilia A and a low titre inhibitor who are undergoing immune tolerance induction (ITI) therapy or who are currently being treated with a bypassing agent (Niastase, FEIBA). The objectives are to better understand the needs of hemophilia patients with inhibitors with the ultimate goal of improving and advancing treatment and care. Your participation in this study may contribute to better health services and products for inhibitor patients with hemophilia.

Your privacy is paramount to us and as such they are committed to the strictest confidentiality of your identities and responses. The results of their surveys are analyzed and reported in aggregate. Your identity is never revealed to anyone including the study sponsors.

At this time, the survey is only available in English.

If you are interested in the study, please contact info@healthpulse.ca.

Survey on patient expectations for effective continuing care

The Canadian Medical Association (CMA), the Canadian Nurses Association (CNA) and the Health Action Lobby (HEAL) tasked a Health Providers Steering Committee to look at the way care is delivered in Canada.

The CMA, the CNA and HEAL, with patients, participated in two summits (May 2012 and February 2013) to define the elements of a functionally integrated health care system and to articulate how this would lead to effective continuity of care for patients. They were then able to draft patient expectations for continuing care.

In order to validate that this is a true representation of patient expectations for effective continuing care, they are asking patients to complete a short survey.

The data compiled will be shared amongst the health providers and health system planners in Canada.

Please allow six minutes to complete. The survey will be available only until Friday, April 25, 2014.

Click here to access the survey.

If you have questions, please contact Nadia Potvin-Piché of the CMA by e-mail at Nadia.Potvin-Piche@cma.ca.

Alprolix, a longer half-life factor IX, approved by Health Canada

Alprolix®, a recombinant factor IX concentrate manufactured by Biogen Idec, was approved by Health Canada March 21, 2014 and by the U.S. FDA a week later. It is indicated in adults and children (≥12 years) with hemophilia B for routine prophylactic treatment to prevent or reduce the frequency of bleeding episodes and for control of bleeding episodes.

Hemophilia Today (HT) interviewed two physicians who were closely involved with the development and clinical trials of Alprolix.

Click here for the full interview.

*IMPORTANT* Deadline approaching for the CHS James-Kreppner Memorial Scholarship and Bursary Program

The CHS James Kreppner Memorial Scholarship and Bursary Program offers the opportunity for those who qualify to receive a scholarship or bursary in the amount of $5,000 to attend a post-secondary institution of their choice.

The program is open to Canadians with hemophilia (factor VIII or IX) or another inherited bleeding disorder (such as von Willebrand disease, a rare factor deficiency or platelet function disorder), carriers, and those who contracted HIV through a blood transfusion. Spouses and children of the above mentioned people may also apply. Those who have received a CHS Scholarship or Bursary are not eligible to reapply for continued support.

Deadline to apply is April 30, 2014. Click here for more information.

“What’s your Dream” Colouring In Competition from the Haemophilia Foundation Australia

The Haemophilia Foundation Australia (HFA), in collaboration with Octapharma, has decided to open its annual children’s drawing contest to the world in conjunction with the upcoming 2014 World Federation of Hemophilia World Congress. The title of the competition is What’s YOUR Dream and the drawings will be divided into three categories:

Category 1: children under 4 years old
Category 2: children aged 5 to 8 years old
Category 3: children aged 9 to 11 years old

The drawings must be sent directly to the HFA in Australia (Details can be found in the PDFs below). Deadline to participate is April 17, 2014. The winners will be announced on the last day of the WFH Congress in Melbourne, May 15.

Click here to download the registration form.
Click here to read the terms and conditions.

Products from paid plasma donations considered safe by blood system regulators around the world

The Ontario government announced its intention of introducing a legislation to prohibit payment for plasma (http://news.ontario.ca/mohltc/en/2014/03/preserving-ontarios-voluntary-blood-donation-system.html).

The CHS wishes to highlight some very important facts regarding paid plasma donations and the Ontario government decision.

  1. A key concern is that many people with bleeding disorders receive plasma-derived products from paid U.S. donors. These include deficiencies in factors I, II, V, VII, IX, X, XI and XIII. Some people with VWD receive plasma-derived products from paid U.S. donors. People with inhibitors often receive plasma-derived products from paid U.S. donors. This decision must not be seen as a message that these products are less safe. While the Ontario Government statement does not expressly say that paid plasma donations are less safe, one can easily come to this conclusion as little other rationale is provided for the decision. Products from paid plasma donors are considered safe by blood system regulators around the world.
  2. Thousands of other Canadians rely on products from paid plasma donors for their health and their lives.
  3. The CHS sees the decision by the Government of Ontario not to allow these centres to open to be a reaction to public opinion, not a decision based on science or ethics. Over the last 20 years, the plasma industry has developed well-documented and effective procedures to ensure that plasma can be collected safely, both for the donors and the recipients.
  4. Not allowing paid plasma donations in Ontario will have no impact on the products Canadian patients receive. Canadian patients will continue to receive products that for the most part are manufactured from plasma from paid U.S. donors. Only 3 of the some 30 plasma-derived products used by Canadians are manufactured, in whole or in part, from plasma collected from unpaid donors by Canadian Blood Services (CBS) and Héma-Québec. The decision does mean, however, that Canada will not contribute to the world supply of essential plasma proteins; global over-reliance on the U.S. as the main source for this material will continue.
  5. The CHS understands the negative reactions many people have to paying for plasma. Plasma from paid donors, at a time in the 1970s and 1980s when quality and safety measures were sorely lacking, played an important role in Canada’s tainted blood tragedy. The location of at least one of the centres very close to vulnerable populations did nothing to allay these fears.
  6. Meanwhile, the CHS will continue to work with CBS and Héma-Québec to encourage blood and plasma donation from unpaid donors, and to make the most complete use of all components. An example of this is the September 2013 announcement of Project Recovery, which turns surplus factor VIII proteins in Canadian plasma collected by CBS into life-saving medicines for hemophilia patients in the developing world.

Hemophilia Today - March 2014

National Endowment Fund Scholarship (University of Ottawa)

The University of Ottawa offers this important award to provide financial assistance to students registered in a post-secondary program in a recognized Canadian institution whose lives or families were affected by the tainted blood tragedy between 1980 and 1989 inclusively.

Deadline to apply is April 30, 2014. Click here for more information.

European Medicines Agency Committee finds no increased inhibitor risk with Kogenate and Helixate Nexgen

Click here
to read the full European Medicines Agency statement.

Click here to read the World Federation of Hemophilia statement.

Paid online survey for patients with hemophilia A and their caregivers

HealthPulse is a Canadian market research and consultancy company. They are presently conducting a paid online survey for which they are inviting patients with hemophilia A and their caregivers to participate.

All of the answers provided in this survey are kept strictly confidential and coded to ensure they are anonymous and cannot be linked back to any individual respondent. The answers will not be shared with anyone else.

If you wish to participate, please send an e-mail at info@healthpulse.ca for a link to the survey.

Vocational assessment tool

The Canadian Social Workers in Hemophilia Care prepared a questionnaire to help people with bleeding disorders gather information about a particular job or career, and to consider how it would fit with their health care needs.

Click here to download and print the vocational assessment tool.

Also available is a list of Website links related to career planning and various scholarship programs. Click here to access the list.

You and your family depend on research...

coderouge at Toronto Fashion Week

The CHS along with Hemophilia Ontario had the opportunity to air a short video during Toronto Fashion Week earlier this fall. The video was aimed at raising awareness about women and bleeding disorders and featured the coderouge program. Click here to watch it.

Products in the pipeline

Never have so many clotting factor concentrates been in development or “in the pipeline”. So many, in fact, that it has become difficult to keep track of them all. So the CHS is publishing five charts, one each for factor VIII, factor IX, inhibitor products, other coagulation products, and a new one for factor VIII and IX and inhibitors together, to help everyone stay informed of their progress through preclinical work, clinical trials and regulatory approval.

Click here for more details.

CHS policy on paid plasma donations

Make a difference - Help save lives

We can stop the suffering of those living with hemophilia and other bleeding disorders. But we can't do it alone. Only with the generous financial support of caring Canadians can we make our dream come true.

To support us

A bandage is not enough.


Click here for more information about this important public awareness and outreach campaign or to download promotional material.