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Hemophilia Today - August 2015





Products in the pipeline - NEW UPDATE (July 24, 2015)

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 one for factor VIII, IX and other rare bleeding disorders together, to help everyone stay informed of their progress through preclinical work, clinical trials and regulatory approval.

Click here for more details.




End of CHS / AHCDC / CSL Behring Hemostasis Fellowship Program

It is with regret that the CHS is announcing the end of the CHS / AHCDC / CSL Behring Hemostasis Fellowship Program which has been in existence since 2001. The CHS wishes to thank CSL Behring for its continued support of this program since 2010 which provided many fellows in hematology or other relevant fields the opportunity to obtain additional focused clinical or research training relevant to hemostasis.



Webcast - Rendez-vous 2015




A Webcast of the Rendez-vous 2015 presentations from the Medical and Scientific Symposium (May 29, 2015) is now available on YouTube.

Click here to access the appropriate links for each session.

Face-to-face or virtual consultations

PARTNERS (Patient Assisted Research Transforming National Effectiveness in Rare Diseases) is a proposed network in chronic disease that has a vision of working together with Canadian rare disease patients and their families to implement a clinical care and research strategy that will improve outcomes and reduce the burden of rare disease by the year 2021.

They are encouraging patients to participate in identifying key research outcomes in the area of rare diseases by completing a survey (until August 5) or to join a group interview to be held in various Canadian cities over the coming weeks.

Click HERE for more information.

Penny wise, pound foolish - The national clinic assessment

In 2013‐14, the Canadian Hemophilia Society (CHS) conducted an assessment of the human
and physical resources in the network of 25 Inherited Bleeding Disorder Comprehensive Care
Centres (IBDCCCs) across Canada. The staff in these Centres care for the vast majority of
Canadians with inherited bleeding disorders. Our goal was to evaluate their capacity to
respect current national Standards of Care. Individual reports were provided to each
Program’s Centre Director.

A national report was presented on May 28, 2015, at Rendez-vous 2015, in Halifax.

Click here to read the full report.



Menstrual Assessment Chart (PBAC)

Great awareness directed to a very targeted audience

The CHS was present on June 10 and 11 at the 72nd Annual Clinical and Scientific Conference of the Society of Obstetricians and Gynaecologists of Canada (SOGC) to accomplish an important work in awareness. A special place had been reserved to women affected with bleeding disorders as the scientific program included a session called “Inherited bleeding disorders in women throughout reproductive life”. Over 500 gynaecologists and obstetricians had the great opportunity of listening to the team from the Women Hemostasis Centre at CHU Sainte-Justine talk about this topic and about coderouge. A great moment for the coderouge program!

A heartfelt thank you to Dr. Diane Francoeur, moderator of the session, who invited her co-workers to come and share their expertise; to Catherine Thibeault, RN, who not only presented but also gave delegates relevant information at the CHS booth; to Dr. Catherine Taillefer, obstetrician; and to Dr. Rochelle Winikoff.


Rochelle Winikoff and Catherine Thibeault proudly standing in the CHS booth.


Catherine Thibeault gives out important information to two doctors from Ontario.




2015 research grants allocated

The Peer Review Committee, under the leadership of Dr. Nancy Dower, completed its grant review process in February 2015. Its recommendations were endorsed by the CHS Board of Directors in March.

Click here to read about the research projects funded for 2015-2016.


Important documents updated

The CHS has recently updated five widely consulted informative documents on three related topics:

  • access to insurance (life, mortgage, travel, health insurance for overseas students, group) for people with bleeding disorders;


  • an overview of the different compensation programs for blood-borne HIV and HCV infection created since 1989.

Please click on the links above to access the revised documents.


Online consultation about Hemophilia Today

The latest issue of Hemophilia Today is now available online on the CHS Web site (see above).

As you will notice, the magazine is undergoing some changes. You can read about them in the Word from the Editor. We are now calling upon you to guide us in additional changes that could further improve the CHS’ newsmagazine.

In order for you to do so, we have created a short online consultation. Please do not hesitate to share your input. We are very eager to read your opinions and ideas.

Click here to access the confidential survey. THANK YOU!




UPDATED CHS resource about HCV treatment support for 1986-1990 claimants

Accessing treatments for hepatitis C through the Hepatitis C January 1, 1986 — July 1, 1990 Class Actions Settlement: What you need to know

If you are a patient who received tainted blood or blood products and a registered claimant of the Hepatitis C (HCV) 1986-1990 Class Actions Settlement, now is a good time to speak to your doctor about new treatments for HCV. Treatment has progressed significantly, and it may be the right time for you to seek a cure.

People who are approved claimants under the Hepatitis C January 1, 1986 — July 1, 1990 Class Actions Settlement may be reimbursed for their costs for treatments and generally accepted hepatitis C medications that are not recoverable under any public or private health care plan. Many companies that make and sell hepatitis C medications have programs to support patients throughout treatment.These programs offer assistance by providing drugs upfront to the 86-90 claimants through their specialty pharmacy. Once the 86-90 plan issues the reimbursement cheques to the patients for their treatment, they, in turn, must reimburse the pharmacy directly.

Because this is not well known by the claimants themselves nor their health care providers, the CHS has developed a new resource to provide more information. Note that the resource was recently updated to include new and additional patient support programs.

Please click here for more information and access to the new brochure.

HIRT? - An innovative injury self-management App




Do you have mild hemophilia?

Have you had injuries that seemed minor at first but then turned into a more serious problem?

Not sure what to do when you have a bleed?

Then HIRT? (Hemophilia Injury Recognition Tool) is just what you need!

This new App, developed following research funded by the CHS/Baxter Canada Inherited Bleeding Disorders Fellowship Program for Nurses and Allied Health Care Professionals, was designed with the help and feedback from young men age 18-35 with mild hemophilia.

Click here for all the details.

E-novella spreading the word on bleeding disorders 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.

CLICK HERE to read 'A Negative'.

CHS support to research and market studies

Several times in the past, the CHS has invited the bleeding disorder community to participate in research and market studies. Once again, we wish to reinforce the importance of these projects and the benefit for our community to participate. Research and market studies are crucial to the advancement of care and treatment. This is your chance to voice your concerns and priorities when it comes time to your care and treatment or those of your child. At many levels, these studies are often one step closer towards a better quality of life.

These studies, however, need our community to gather sufficient data to be relevant.

Please take the time to see what is presently happening with regards to research and market studies and to see if you could take an active part in them.

On-going RESEARCH studies currently recruiting participants:
  • Invitation to families of children with bleeding disorders to participate in an interview-based research study
  • Do you have mild hemophilia?
  • Carriers of hemophilia wanted for survey-based research study
  • Web survey about perceived well-being in people with hemophilia

Click here
for more details on each of these research studies.

__________________

On-going MARKET studies currently recruiting participants:
  • Absolutdata is currently looking for adults and youth as well as parents of children with hemophilia A for a market research study.
  • HealthPulse 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).

Click here
for more details on each of these market studies.

A bandage is not enough.





HELP SPREAD THE WORD ABOUT INHERITED BLEEDING DISORDERS.


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



You and your family depend on research...






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.

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