Canadian Hemophilia Society

Canadian Hemophilia Society

April 16, 2008 08:00 ET

Hemophilia Organizations Promote World Hemophilia Day

MONTREAL, QUEBEC--(Marketwire - April 16, 2008) - Tomorrow, April 17, the Canadian Hemophilia Society (CHS), its provincial chapters and the World Federation of Hemophilia (WFH) will promote World Hemophilia Day in Canada and around the world.

More than one in 100 Canadians carry an inherited bleeding disorder gene, and more than 30,000 of them have symptoms severe enough to require medical care. Surprisingly, in Canada, even if hemophilia is easily diagnosed, many people have not yet been properly diagnosed for other bleeding disorders, particularly those affected with von Willebrand disease. This bleeding disorder, the most common one in Canada and in the rest of the world, affects men, women and children. A woman's quality of life, however, can be more seriously affected. Heavy menstrual bleeding can lead to unnecessary hysterectomies if the woman has not been properly diagnosed.

There are no cures for inherited bleeding disorders but effective treatments are available for those diagnosed. Left untreated, however, bleeding disorders can be life threatening.

According to the World Federation of Hemophilia (WFH), only 30% of the estimated 400,000 people with hemophilia worldwide have been diagnosed. This year, the international theme for World Hemophilia Day is Count Me In, focusing on global efforts to identify and diagnose people at risk of bleeding disorders.

"The WFH's vision of Treatment for All is that all people with bleeding disorders need access to adequate care and treatment," says Mark Skinner, president of the WFH. "The first step to achieving this is to identify those patients."

To meet this goal, many awareness activities will take place in Canada. For example, events will be held in schools in Newfoundland, Alberta and Quebec by young dynamic boys with hemophilia to raise awareness about their condition. Many other awareness activities are also planned, for example, in Alberta, Labrador, Prince Edward Island, Nova Scotia and Quebec. In fact, as part of a tradition that started in 1999, representatives from the Quebec Chapter of the CHS (CHSQ) are present today at the National Assembly. A motion without prior notice will be pronounced by the Minister of Health and Social Services to highlight World Hemophilia Day and an awareness table will be set up in the hall of the Parliament Building.

Finally, a very special activity has been organized this year. The CHSQ, the CHS and the WFH, whose head offices are all located in Montreal, will join forces with great enthusiasm to host an awareness day at the Montreal Central Train Station. Staff and volunteers will be present to meet passers-by, distribute material, raise funds for research and answer questions. It is a premiere for the three organizations who wish to make this an annual tradition.

About the Canadian Hemophilia Society (CHS)

Founded in 1953, the Canadian Hemophilia Society (CHS) is a national voluntary health charity. Its mission is to strive to improve the health and quality of life for all people with inherited bleeding disorders, and to find a cure. Its vision is a world free from the pain and suffering of inherited bleeding disorders.

About the Quebec Chapter of the CHS (CHSQ)

Founded in 1959, the CHSQ is a not-for-profit organization whose vision is a world free from the pain and suffering of inherited bleeding disorders. Its mission is to improve the health and quality of life of people suffering from an inherited bleeding disorder as well as those suffering from the consequences of a contaminated blood transfusion.

About the World Federation of Hemophilia (WFH)

The WFH is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. Established in 1963, it is a global network of patient organizations in more than 100 countries and has official recognition form the World Health Organization.

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