The Canadian Hemophilia Society at a Glance

A world free from the pain and suffering of inherited bleeding disorders.

• The Canadian Hemophilia Society (CHS) is a national voluntary health charity.
• Our national headquarters are in Montreal, and we have 10 provincial chapters. There are regional offices in three provinces: Quebec, Ontario and Manitoba. The CHS has approximately 300 active volunteers and 20 staff 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 specialists in Canada’s 25 bleeding disorder treatment centres, 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.

• Care and Treatment – We work in close collaboration with medical professionals—physicians, nurses, physiotherapists, social workers, and other related specialists—in the 25 bleeding disorder treatment centres across the country. Our common goal is to ensure optimal multi-disciplinary care and treatment. We define this as comprehensive care.
• Research – We provide clinical and research fellowships and we fund leading Canadian researchers working in the field of bleeding disorders in an effort to improve care and treatment and ultimately find a cure.
• Support and Education – We are the primary source of educational materials designed for people with bleeding disorders, their families, health care professionals and the general public. Our goal is to ensure access to up-to-date information adapted to each individual’s needs.
• Safe, Secure Blood Supply – We played a key role in building a safer blood system for Canadians, leading to the creation of Canadian Blood Services and Héma-Québec, and we continue to be the leading patient organization to independently monitor the safety and supply of blood and blood products within the Canadian Blood System. The CHS is committed to doing its part to make sure there is never another tainted blood tragedy.
• International Development – The Canadian Hemophilia Society and its dedicated teams of volunteers and health care professionals undertake leadership roles in supporting developing countries to improve care and treatment. Currently we have twinning partnerships in eight developing countries.

In 1953, a small group of hemophiliacs, their families and physicians in Montreal founded the Canadian Hemophilia Society. Their dream at the time was to improve the quality of life and find a cure for hemophilia. The close collaboration among patients, health care providers and researchers was unique then... and now.

Through their tireless efforts, the CHS quickly developed from a small, Montreal-based support group to a national volunteer organization with chapters in each province.

From the beginning, Frank Schnabel, the founder of the CHS, and the other Society leaders devoted their efforts to ensuring that adequate supplies of blood products—plasma, cryoprecipitate and, by the 1970s, clotting factor concentrates—were available to treat hemophilia. By the early 1980s, they had helped to build a network of hemophilia treatment centres across Canada to provide comprehensive medical care.

Tragically, during the 1980s, Canada’s blood supply became contaminated with HIV, the virus responsible for AIDS. As a result, 700 hemophiliacs and 400 other Canadians were infected through blood products. Two-thirds have passed away. Similarly, before 1990, approximately 1600 hemophiliacs and thousands of other transfusion recipients were infected by the hepatitis C virus. Subsequently, the CHS advocated successfully on behalf of all Canadians affected by tainted blood for compassionate financial assistance from both the federal and provincial governments. We were instrumental in the reform of Canada’s blood system. As the patient group most affected by this public health tragedy, the CHS continues to work vigilantly to ensure that Canadians enjoy the safest blood products in good supply.

As care and treatment for hemophilia improved through the 1990s, the CHS was able to devote more time and energy to other bleeding disorders: von Willebrand Disease, platelet function disorders and rare factor deficiencies, while continuing to address complications arising for those with hemophilia who develop inhibitors (a serious health complication in which the body’s own immune system rejects the clotting factor treatment).

We have been and continue to be a leader in raising awareness around issues for women with bleeding disorders, a group that continues to be under-served and whose health care needs deserve greater attention.

Historically, research has been a priority for the CHS. In recent years, the Society has invested $400,000 annually in peer-reviewed research projects to improve treatment and ultimately find a cure.

Today, the Canadian Hemophilia Society is governed by a group of experienced and dedicated volunteers from across the country. They are actively involved in the development of national policies and programs to meet the needs of all people with bleeding disorders.