Canadian Hemophilia Society
A Canadian nonprofit organization supporting people with inherited bleeding disorders through advocacy, education, research funding, and community services.
Last updated August 26, 2026
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Overview
The Canadian Hemophilia Society (CHS) is a national Canadian nonprofit organization dedicated to people affected by hemophilia and other inherited bleeding disorders. Founded in Montreal in 1953 by Frank Schnabel, it began as a support organization connecting physicians with people living with hemophilia. Over time, it developed into a national federation of provincial chapters and became an important advocate for access to treatment, patient education, public awareness, blood-safety policy, and medical research. The society's original identity was centered on hemophilia, a group of inherited disorders in which blood does not clot normally because of deficiencies in particular clotting factors. As treatment improved and the organization gained a broader understanding of the needs of affected communities, its scope expanded to include von Willebrand disease, platelet-function disorders, rare factor deficiencies, and other inherited bleeding conditions. This broader remit is reflected in the organization's later use of the name Bleeding Disorders Canada, while the Canadian Hemophilia Society remains the historically established name and identity. CHS operates through chapters in every Canadian province. The national organization is based in Montreal, while provincial chapters are managed by their own boards of directors. The chapter network supports local peer groups, education, advocacy, family services, and connections with healthcare professionals. The organization has also reported a substantial volunteer base distributed across Canada and maintains a close affiliation with the World Federation of Hemophilia. A major part of CHS's public history is its involvement in Canada's contaminated-blood crisis. During the 1980s, people with hemophilia and other blood-product users were infected with HIV and hepatitis C through contaminated blood and plasma-derived products. CHS criticized failures in the testing and management of donated blood and later participated in the Krever Inquiry, which examined the causes and consequences of the crisis. The society was one of the organizations representing people infected with HIV through contaminated blood or blood products and sought legal compensation and accountability on their behalf. Research support is another central activity. CHS has funded and supported programs intended to improve treatment, understand the psychosocial effects of bleeding disorders, and advance the search for long-term treatments or cures. Programs associated with the society have included the Dream of a Cure Research Program, the CHS–Pfizer Care until Cure Research Program, the CHS–Novo Nordisk Canada Psychosocial Research Program, and the CHS–Bayer–ADVANCE Canada Research Program. The organization also offers academic scholarships for Canadians with inherited bleeding disorders. In February 2026, chief executive Sarah Ford announced that the parent organization would be renamed Bleeding Disorders Canada. The proposed change was presented as a way to represent the broader range of inherited bleeding disorders served by the organization rather than focusing on hemophilia alone. As of 2026, the board president was identified as Emil Wijnker. CHS's continuing role is that of a patient-centered national advocacy and support organization working across clinical, social, research, and public-policy issues affecting Canada's bleeding-disorders community.
History
The Canadian Hemophilia Society was established in Montreal in 1953 by Frank Schnabel as a support group linking physicians and people living with hemophilia. Its creation reflected the need for organized patient assistance, medical information, and mutual support at a time when hemophilia treatment was more limited and families often had to navigate the condition with little coordinated guidance. The organization expanded beyond Quebec during its first decade. An Ontario chapter was founded in 1957 by Joyce Rosenthal, followed by a Quebec chapter in 1959. By 1969, every Canadian province had an active CHS chapter. This chapter structure became the foundation of the society's national operating model, allowing local boards and volunteers to address regional needs while participating in a Canada-wide advocacy and education network. As therapies improved during the latter part of the twentieth century, the society's role broadened. Its work increasingly covered conditions other than classic hemophilia, including von Willebrand disease, platelet-function disorders, and rare factor deficiencies. The change reflected both advances in diagnosis and the recognition that people with less common inherited bleeding disorders also required information, specialist care, peer support, and representation in health-policy discussions. CHS became particularly prominent during the contaminated-blood crisis of the 1980s. Blood and plasma-derived products used by people with hemophilia and related conditions were contaminated, exposing recipients to HIV and hepatitis C. The society challenged the failures of the Canadian blood system, including inadequate testing and oversight of donated blood. Its advocacy formed part of the broader patient movement seeking recognition, public accountability, improved safety standards, and compensation for those infected. The society continued this work during the Krever Inquiry, which began in the 1990s and examined the management of Canada's blood supply. In 1993, CHS was one of nine organizations representing people infected with HIV through contaminated blood or blood products. Its participation connected the experiences of affected patients to the inquiry's examination of institutional responsibility, regulation, and public-health decision-making. Alongside advocacy, CHS developed a continuing program of research support. Its initiatives have addressed treatment development, the possibility of cures, and the psychological and social effects of living with an inherited bleeding disorder. Named programs have included the Dream of a Cure Research Program, the CHS–Pfizer Care until Cure Research Program, the CHS–Novo Nordisk Canada Psychosocial Research Program, and the CHS–Bayer–ADVANCE Canada Research Program. The society has also supported access to education through scholarships for Canadian students with inherited bleeding disorders. The organization maintains a national headquarters in Montreal and a network of ten provincial chapters managed by their own boards of directors. It is closely affiliated with the World Federation of Hemophilia and relies on staff, chapter leadership, healthcare relationships, and volunteers to deliver services across Canada. In 2026, chief executive Sarah Ford announced a proposed renaming of the parent organization as Bleeding Disorders Canada. The change was intended to signal that the organization serves a broad community rather than hemophilia alone. Emil Wijnker was identified as president of the board in that period. The historical CHS identity remains associated with Canada's national movement for bleeding-disorder support, patient rights, safer blood systems, and research.
- 2026
Broader Bleeding Disorders Canada identity announced
[1]Chief executive Sarah Ford announced that the parent organization would adopt the Bleeding Disorders Canada name to reflect a wider mandate.
- 1993
Participation in the Krever Inquiry
[1]CHS represented people infected with HIV through contaminated blood or blood products during the inquiry into Canada's blood system.
- 1980
Advocacy during the contaminated-blood crisis
[1]CHS criticized failures in the testing and oversight of blood and blood products after infections affected the bleeding-disorders community.
- 1969
National provincial coverage achieved
[1]All Canadian provinces had an active Canadian Hemophilia Society chapter.
- 1959
Quebec chapter established
[1]A Quebec chapter was established as the organization continued to formalize its provincial structure.
- 1957
Ontario chapter established
[1]Joyce Rosenthal founded the Ontario chapter, extending the society's national chapter network.
- 1953
Organization founded in Montreal
[1]Frank Schnabel founded the Canadian Hemophilia Society as a support organization connecting physicians and people with hemophilia.
Products and positioning
A national patient advocacy and support organization for Canadians affected by hemophilia and other inherited bleeding disorders, combining community services, education, public-policy advocacy, blood-safety work, and research funding.
Support service
Patient and family support services
CHS provides a national framework for peer support, family assistance, information sharing, and community connection for people affected by hemophilia and other inherited bleeding disorders. Services are delivered through provincial chapters and are intended to help individuals manage the practical, social, and emotional consequences of lifelong bleeding conditions.
Education and advocacy
Education and public awareness
The society disseminates information about inherited bleeding disorders, treatment, patient needs, and public-health policy. Its awareness work also helps explain conditions such as hemophilia, von Willebrand disease, platelet-function disorders, and rare factor deficiencies to the wider public and to decision-makers.
Medical research support
Research funding programs
CHS supports research intended to improve therapies and advance the search for cures. Its named initiatives have included the Dream of a Cure program, the Pfizer Care until Cure program, the Novo Nordisk Canada Psychosocial Research Program, and the Bayer–ADVANCE Canada Research Program.
Scholarship
Academic scholarships
The organization offers academic scholarships for Canadians with inherited bleeding disorders. The scholarships are part of its broader effort to support educational opportunity and reduce barriers faced by people managing chronic bleeding conditions.
Controversies
1993
Krever Inquiry representation
During the inquiry that followed the contaminated-blood crisis, CHS was one of nine organizations representing people infected with HIV through contaminated blood or blood products and pursued compensation and accountability.
1980
Contaminated-blood crisis
CHS became an active advocate during Canada's contaminated-blood crisis, criticizing failures to adequately test and manage blood and blood products after recipients with bleeding disorders were infected with HIV and hepatitis C.
Brand decisions
2026
Adoption of the Bleeding Disorders Canada nameStrategyBackground
The society's work had expanded from hemophilia to a wider range of inherited bleeding disorders, including von Willebrand disease, platelet-function disorders, and rare factor deficiencies.
Action taken
Chief executive Sarah Ford announced that the parent organization would be renamed Bleeding Disorders Canada.
Aftermath
The announced identity change was intended to make the organization's broader patient community more visible while retaining the historical association with the Canadian Hemophilia Society.
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