Our Partners











How We Are Addressing These Needs

The development of standards of care

In collaboration with the Association of Hemophilia Clinic Directors of Canada and the multi-disciplinary teams of health care professionals from bleeding disorder treatment centres, the CHS is helping to develop standards of care. These will lead to a peer-review accreditation process for the 25 centres in Canada.

Expansion of our research work

The CHS currently funds both clinical research to improve care and basic research aimed at finding a cure. We also fund research fellowships and studentships. These programs need to be expanded to attract more young physicians and scientists into the field of hemostasis to improve care and ultimately find a cure. Research into coagulation will contribute to knowledge in the related field of thrombosis, heart disease and stroke.

Training of health care professionals

It is critical that health care professionals from three key fields in the delivery of comprehensive care—nursing, physiotherapy and social work—meet annually to share best practices. Every three years, new staff from bleeding disorder treatment centres meet for intensive training. These initiatives are not possible without the financial and logistical support of the CHS.

CHS Website

The CHS operates one of the most extensive web sites on bleeding disorders in the world with over 1000 visitors a day. Documents are available in both English and French. Every year, visitors from over 175 countries download tens of thousands of educational documents on hemophilia, von Willebrand Disease, platelet function disorders and rare factor deficiencies from our web site.

Passport to Well-Being

This 4-part program covers the key issues of home infusion, physical activity and fitness, the challenge of pain management and the importance of accurate health record-keeping in the context of self-care. It consists of booklets, electronic presentations and workshops designed to be delivered at patient meetings across the country.

Step by Step Program for Parents

This innovative program is designed to break the isolation of families whose children have recently been diagnosed with a bleeding disorder. Information Kits, called First Steps, Next Steps and Giant Steps, gradually introduce families to educational materials and to the CHS and its programs. A web site allows a parent to find an experienced “buddy”, safely and confidentially. An on-line Forum provides a medium for exchanging information on the parenting of a child with a bleeding disorder. Just the Guys Getaways promote greater involvement of the father or male role model in the care of a boy with hemophilia.

ER Program

When a person with a bleeding disorder goes to an Emergency Department, time is of the essence: he/she is hemorrhaging. Yet the bleeding is often internal and not obvious; bleeding disorders are rare and not well-known to emergency department personnel. The CHS, in collaboration with bleeding disorder treatment centres, has undertaken a program to educate both patients and their families, and ER personnel, with a goal to improving emergency care. These efforts need to be continually evaluated and repeated. This program can save lives.

Blood safety and supply vigilance

The CHS has pledged that it will do all in its power to avoid another tainted blood tragedy in Canada. Its Blood Safety and Supply Committee harnesses the resources of a talented group of volunteers with a variety of perspectives to advise the Board of Directors. Members of this committee sit on every important blood safety advisory committee in the country, including at the level of federal and provincial governments, Canadian Blood Services (CBS) and Héma-Québec. As a result, the CHS ensures it has a strong voice across the country. The Committee also maintains close ties with international blood safety groups. Every two years the CHS produces and disseminates a Report Card which assesses the state of affairs of our Canadian Blood System, including the work of CBS, Héma-Québec, Health Canada and the Public Health Agency of Canada.

International twinning

In collaboration with the World Federation of Hemophilia, also headquartered in Montreal, the CHS is very active in twinning partnerships with developing countries. With the goal of building organizational capacity, we have developed twinning projects with South Africa, Serbia, Belarus, Tunisia, Mongolia, Jordan and Iran. On the medical side, physicians in treatment centres in Calgary, Ottawa, Toronto, Hamilton and London are twinned with hemophilia centres in Belarus, Jordan, Serbia and six cities in China. Their goal is to share expertise and improve care.

Women with bleeding disorders

Hemophilia, considered the most severe bleeding disorder, affects mainly males. As a result, the problems of women with bleeding disorders—heavy menstrual bleeding, anemia, reduced quality of life, hysterectomy at a young age—were downplayed. Those problems are starting to be taken more seriously. Bleeding disorder clinics specifically for women have been initiated in some of the 25 centres across the country. The CHS is developing educational materials for von Willebrand Disease and for carriers of hemophilia. We still have a long way to go in building awareness about these disorders in women. As a result we are targeting our educational efforts at affected families, key groups of health care professionals and the general public.

Support for families

Canada is a huge country and many bleeding disorders are quite rare. Care and treatment is often home-based so families do not have an opportunity to meet others facing the same challenges. It is up to the CHS to offer such peer support. Its chapters offer educational events so that people can break their isolation and learn from and support each other.

Educational activities

The CHS has produced an extensive catalogue of high-quality educational materials for patients and their families, and for health care professionals. These cover the entire field of bleeding disorders from hemophilia to the rarest factor deficiency. Because our materials are so comprehensive, they are often adapted by hemophilia organizations in other countries. The materials need to be continually updated as medical science evolves, and re-printed. The CHS also organizes medical symposia and workshops for health care professionals and for families affected by bleeding disorders.

Student scholarships and bursaries

The CHS and many of its Chapters offer funding support by way of student scholarships and bursaries to qualified students with inherited bleeding disorders and family members who are seeking post-secondary education. Some kinds of physically challenging work are not recommended for people living with a bleeding disorder; as a result, our organization strongly promotes higher education.

Summer Camps

Children with inherited bleeding disorders face unique challenges in their daily lives. Summer camp is an opportunity that many Canadian children are privileged to enjoy, but for children with bleeding disorders a regular summer camp experience may not be possible. Thanks to a “comprehensive care approach” and the tremendous support of our specialized nurses, the CHS through many of its Chapters is able to offer a specialized summer camp experience with qualified health care provided on-site. Summer camps and family camps provide unique opportunities for children to learn how to self-infuse their clotting factor treatments, experience the great outdoors and develop lasting friendships with peers who also have bleeding disorders.

HIV-HCV co-infection

Tragically, many people with bleeding disorders were infected with not one but two infections through tainted blood: HIV and Hepatitis C virus (HCV). As a result, the organization has gained extensive knowledge about the treatment challenges of co-infection. Through its web site and publications this information is widely shared. In addition, it is working for access to liver transplants for those who bear the dual burden of HIV and HCV infection.

The Network of Rare Blood Disorder Organizations

Faced with serious challenges including the tainted blood tragedy over its 53-year history, the CHS has developed some unique expertise in issues related to comprehensive care, patient registries, a collaborative relationship with health care professionals and post-marketing drug surveillance. Other rare blood disorders—thalassemia, sickle cell disease, primary immune deficiency, hereditary angioedema, aplastic anemia, to take some examples—are now benefiting from this expertise. In 2004, the CHS created the Network of Rare Blood Disorder Organizations to share our knowledge and work collaboratively on common issues. The activities of the Network are expanding each year, and the CHS is playing a pivotal role in its development and ongoing support.