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 10,000 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 16 individuals with valuable skills and representing the organization’s 10 provincial chapters. 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.
A world free from the pain and suffering of inherited bleeding disorders.
The people we serve
The Canadian Hemophilia Society provides information, programs and services to …
- people with hemophilia, von Willebrand disease, rare factor deficiencies and inherited platelet disorders;
- carriers of these conditions;
- their families;
- the patients’ communities (friends, co-workers, daycare workers, teachers, employers…);
- health care providers in the Canadian network of inherited bleeding disorder comprehensive care clinics;
- other health care providers (primary care practitioners, dentists, specialists…) who may provide care for people with inherited bleeding disorders.
Achieve standards and evidence-based comprehensive care for all people with inherited bleeding disorders throughout their lifespans.
Promote, fund, facilitate and conduct fundamental, clinical and quality-of-life research to improve health and quality of life and ultimately find cures.
Education and Support
Deliver evidence-based information and support to patients, their families, health care providers and the general public across Canada in both official languages, English and French.
A Cohesive Organization
Build a cohesive organization through good governance, member engagement, effective communications and fundraising to support our strategic goals.
The Canadian Hemophilia Society is committed to the following values:
By providing information, programs and services to all people with inherited bleeding disorders of all ages and their families in both English and French and, where possible, in other languages.
By acting honestly, responsibly, transparently and accountably.
By treating the people with whom we interact with dignity, fairness and compassion.
By being well connected to our grassroots community.
By fostering meaningful and collegial relations, and strong partnerships among our diverse stakeholders.
Our Global Responsibility
While the primary mission of the Canadian Hemophilia Society is to work within our own borders on behalf of Canadians, this strategic plan recognizes our responsibility to the global bleeding disorder community.
Canadians with inherited bleeding disorders enjoy access to advanced therapies. Our comprehensive care clinics provide a high standard of care. Such is not the case around the world where 75% of people with hemophilia do not have access to safe and efficacious treatments and highly trained health care providers. Life expectancy remains less than 20 years and these short lives are filled with pain and suffering.
The national organization and its chapters, as well-developed patient associations, acknowledge their responsibility to work with the World Federation of Hemophilia (WFH) to further its mission of TREATMENT FOR ALL.