THE CANADIAN HEMOPHILIA SOCIETY – WHO WE ARE
The Canadian Hemophilia Society is an organization that works at three levels: nationally, provincially and locally. We have ten provincial chapters across the country. Some of our chapters have additional local structures that we refer to as regions.
Together we are the Canadian Hemophilia Society.
About 300,000 Canadians carry an inherited bleeding disorder gene. One in ten of these people—at least 30,000 Canadians—have symptoms severe enough to require medical care. Many of them have not been properly diagnosed. Only 8,000 people with inherited bleeding disorders are registered in the Canadian network of inherited bleeding disorder comprehensive care clinics.
Inherited bleeding disorders are a family of diseases in which blood proteins or platelets that help the blood to clot are missing or do not function properly, resulting in prolonged bleeding. These conditions include hemophilia A and B, von Willebrand disease, rare factor deficiencies (factors I, II, V, VII, X, XI, XIII), and platelet function disorders. While surface cuts and abrasions can create minor problems, the main risk for children and adults with these disorders is internal bleeding, mainly into muscles and joints or vital organs, which can cause death. For women there are additional risks: heavy menstrual periods, which in the absence of proper diagnosis can lead to reduced quality of life, unnecessary hysterectomies, and the risk of hemorrhaging during childbirth.
For all people with inherited bleeding disorders, prolonged bleeding after injury or surgery can be life threatening.
The Canadian Hemophilia Society (CHS), whose national headquarters are in Montreal, is a national voluntary health charity. Its Board of Directors is made up of 18 individuals designated by the organization’s 10 provincial chapters, up to 4 directors-at-large, a medical advisor and a youth representative. Each provincial chapter in turn is managed by its own Board of Directors. Many chapters are separately incorporated and have their own charitable registrations. Three provinces—Quebec, Ontario and Manitoba—currently have offices with permanent staff. All chapters work in accordance with CHS by-laws and conform to national policies. The national organization and its 10 chapters share a common vision and mission. The CHS has approximately 300 active volunteers across the country.
The CHS is affiliated with the World Federation of Hemophilia, which is officially recognized by the World Health Organization. We work in collaboration with health care providers in Canada’s 25 inherited bleeding disorder comprehensive care clinics, the blood system operators (Canadian Blood Services and Héma-Québec), the Network of Rare Blood Disorder Organizations, the hepatitis C community, the AIDS community, and others who share our common interests.
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