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Submission on the funding of extended half‐life factor IX concentrates

Alprolix™, an extended half-life factor IX for the treatment of hemophilia B, was approved by Health Canada in March. The provinces and territories are currently reviewing whether or not to add Alprolix to the list of factor concentrates reimbursed through the blood system budget, and then distributed by Canadian Blood Services and Héma-Québec. The Canadian Hemophilia Society has submitted its recommendations.

Click here to read the CHS recommendations.

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.

E-novella spreading the word on bleeding disorders launched on Wattpad

One in 100 Canadians carries an inherited bleeding disorder gene, yet so many remain undiagnosed. In an effort to educate a younger audience about the symptoms and risks of bleeding disorders, we’ve developed an e-novella – entitled ‘A Negative’ – to spread the word in an engaging and memorable way.

Playing off the popular Harlequin romance genre, ‘A Negative’ tells the story of a young woman unknowingly living with von Willebrand disease. We’ve published the e-novella on Wattpad – the world’s largest online community of writers and readers – in order to connect with young women across Canada. This unique approach introduces the issue into a different medium, enabling us to speak to and educate an engaged but unsuspecting audience.

CLICK HERE for the press release.

If you can’t donate blood, recruit an ally!

We have been working with Canadian Blood Services (CBS) and both the patient and LGBTQ communities on the MSM donor deferral criteria, which last year were reduced to five years.

One of the goals of our work since then has been to better explain the justification for the deferral and end the student boycotts of blood donor clinics, instituted to protest the indefinite deferral.

One of the group members came up with the idea of 'Ally Blood Donor Clinics' in which a person who cannot donate (for whatever reason) would bring a person to donate in his/her place. One 'Ally Blood Donor Clinic' was held in Toronto so far. Two more are being organized by CBS in London (July 25) and Vancouver (August 1).

We invite you to spread this message among people in the bleeding disorder community, many of whom cannot donate because they receive(d) clotting factor concentrates, with the goal of bringing allies to donate.

Poster (pdf)

2013 CHS Annual Report

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.

International Frank Schnabel Award given to David Page

On May 15, 2014, at the World Federation of Hemophilia (WFH) Congress in Melbourne (Australia), the WFH International Frank Schnabel Award was presented to CHS Executive Director, David Page.

Named in honour of WFH founder Frank Schnabel, this prestigious award is given to an individual with hemophilia, an inherited bleeding disorder, or to a family member, who has contributed significantly in furthering the mission and goals of the WFH.

Congratulations David! An esteemed acknowledgment and well-deserved!

From left to right: Frank Schnabel III, David Page and Alain Weill, WFH President

Invitation to families of children with bleeding disorders to participate in an interview-based research study

Recruitment is underway for an interview-based research study. The purpose of the study is to learn about the experiences and needs of families of children living with bleeding disorders, as they learn to live with and manage their disorder from diagnosis through other key care transitions.

Participation is open to children and youth ages 5-25 years old living with a bleeding disorder (including: hemophilia, von Willebrand disease, and other rare bleeding disorders), and their families (parents and siblings).

Click here for more details.

2014 CHS research grants awarded

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.

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...

Hemophilia Today - March 2014

A bandage is not enough.


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

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