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The CHS is interested in your thoughts on novel factor VIII and IX agents that will possibly be introduced in the next few years. The information and insights you provide will help us to understand patient preferences. We will use this information to advocate for different treatment options. We would greatly appreciate you completing the following questionnaire. Your answers will remain confidential.

Please click here to access the survey. Thank you!

BECOME INVOLVED IN WORLD HEPATITIS DAY 2012 !


On July 28, be a part of World Hepatitis Day 2012 in Canada and help raise awareness.


You can also organize or participate in a World Hepatitis Day activity! For full details about event dates and locations or to access tools and promotional materials, please visit www.whdcanada.ca.

Survivor benefits for spouses and children of long-term survivors covered by the Multi-Provincial Territorial Assistance Program (MPTAP)

• Were you directly infected with HIV through the blood system?
• Are you covered under the MPTAP compensation plan?
• Did you marry or have children since September 15, 1993?

If you answered “yes” to these questions we need to hear from you.

IF YOU SIGNED THE MPTAP AGREEMENT AND HAVE SUBSEQUENTLY MARRIED, YOUR NEW SPOUSE OR ANY CHILDREN BORN ARE NOT ENTITLED TO SURVIVOR BENEFITS!

IF THIS APPLIES TO YOU, WE WANT TO HELP. WE WOULD LIKE TO FIND OUT HOW MANY OF OUR MEMBERS ARE IN THIS SITUATION.

The CHS is prepared to lobby provincial and territorial Health Ministers with a view to extending survivor benefits to all spouses and children of directly infected long-term survivors covered by the MPTAP, including those spouses and children who became part of the claimants’ lives after the time of applying and being accepted under the plan. We are also looking for individuals who are prepared to join the working group and help bring this to fruition.

For more information please click here or contact Michel Long at mlong@hemophilia.ca or 1-800-668-2686.

A comprehensive guide for people with von Willebrand disease and their families.

Developed and published by the Canadian Hemophilia Society and revised in 2011.

PDF

Promising breakthrough in gene therapy for hemophilia B. Click here to read more.

Other related articles:
Treatment for Blood Disease Is Gene Therapy Landmark
by Nicholas Wade  |  The New York Times

Gene Therapy Shows Promise for Treating Hemophilia
by Alice Park  |  Time

A group of British hemophiliacs are lobbying for a full public inquiry into the tainted blood tragedy of the 1970s and 1980s in the U.K., and are requesting adequate compensation. They have produced a video on YouTube to document the lives of some victims of the contaminated blood disaster in the UK. It includes quotes from those affected, medical personnel working in the phamaceutical industry and government officials. It's around 20 minutes - set to music, with pictures of all those who took part in the project.

Tainted Blood - Betrayal and Lies

To learn more about their efforts, this committee of volunteers also have a Web site:
www.taintedblood.info

Did the Canadian tainted blood tragedy have an impact on you, a member of your family or friend(s)?
If it did and you are interested in telling your story, we’d like to hear from you.

The Canadian Museum for Human Rights (CMHR), currently under construction in Winnipeg, is seeking submissions of personal stories and experiences from Canadians, which would help shape the permanent exhibitions and public programs of the Museum. The stories will become part of the CMHR archive of oral histories so that others can learn from the experiences. More information can be found on their Web site at humanrightsmuseum.ca/share-your-story.

Click here to read more.

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.