We are a group of researchers and care providers from diverse backgrounds bound together by our common interest in hemophilia or in research methods applicable to it. Our core group is based at McMaster University (Canada) but our scope and collaborations have no geographical limitations.
We care for hemophilia patients. We believe it is a rare disease with very specific needs. We believe in evidence-based medicine and equity in resource allocation. We hope to unveil a common ground and language to foster better understanding and synergy between the hemophilia community and the larger communities of health care research, policy making and health services research.
1. Developing appropriate methodology to understand the evidence behind hemophilia and its treatment.
2. Contribute to the development of a common language for the hemophilia and broader research community.
3. Facilitate uptake of proper research methodology by the hemophilia community.
4. Attract world class researchers to the hemophilia research field.
5. Educate patients about the research goals and needs in the field.
6. Disseminate the best available evidence on hemophilia and its treatment.