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Hemophilia Today - August 2014

NEW - Identifying common joint & muscle bleeds

The Canadian Physiotherapists in Hemophilia Care (CPHC) have developed an information booklet designed to help people living with bleeding disorders identify common joint and muscle bleeds in their earliest stages, so that proper treatment can begin as soon as possible. It is written to help people of all ages perform a self-assessment and to help parents assess their children.

Click here to download the booklet.

If you want copies of the booklet, please contact the CHS national office.

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.

2013 CHS Annual Report

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.

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.

2014 CHS research grants awarded

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.

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...

A bandage is not enough.


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

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