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 remains so today.
Through their tireless efforts, the CHS quickly developed from a small, Montreal-based support group to a national volunteer organization. Ontario created the first provincial chapter in 1957, followed by Quebec in 1959. By 1969, chapters existed 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 care and treatment.
Tragically, during the 1970s and 1980s, Canada’s blood supply became contaminated by blood-borne pathogens. Seven hundred hemophiliacs and 400 other Canadians were infected with HIV, the virus responsible for AIDS, through blood products. Three-quarters have passed away. Similarly, before 1990, approximately 1,600 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. The CHS was 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 inherited 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 inherited 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 half a million dollars annually in peer-reviewed research projects to improve treatment and ultimately to find a cure.
Over the last decade, the CHS has recognized its responsibility to the global bleeding disorder community. In addition to hosting two successful World Congresses—Montreal in 2000 and Vancouver in 2006—the CHS, through both its national organization and its chapters, has participated in World Federation of Hemophilia twinning relationships all around the world.
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 programs and services to meet the needs of all people with inherited bleeding disorders.
Souvenir Book of the Canadian Hemophilia Society 50th Anniversary