RESEARCH
For over 30 years, thanks to the Hemophilia Research Million Dollar Club endowment,
generous individual donors, committed corporate sponsors and CHS chapters and
regions across the country, the CHS has been able to invest millions of dollars in
research in Canada through four different research programs:
The CHS Dream of a Cure Research Program
The CHS/Pfizer Care until Cure Research Program
The CHS/Novo Nordisk Psychosocial Research Program
The CHS – Bayer – ADVANCE Canada Research Program
Past research programs
CHS / AHCDC / CSL Behring Hemostasis Fellowship Program
CHS – Baxalta Fellowship Program
CHS-Shire Fellowship Program
OPPORTUNITIES TO PARTICIPATE IN STUDIES
The CHS invites the bleeding disorder community to participate in research and marketing studies. These studies are crucial to the advancement of care and treatment and often help move one step closer towards a better quality of life. These studies, however, need our community to gather sufficient data to be relevant.
Opportunities to participate in research
Opportunities to participate in marketing research studies
SCHOLARSHIPS/FELLOWSHIPS
James-Kreppner Memorial and Scholarship and Bursary Program
Karttik Shah Youth Fellowship
Dr. Ronald E. George Congress Fellowship
National Endowement Fund Scholarship – University of Ottawa
Other scholarships
GENE THERAPY EDUCATION PROGRAM
Gene therapy is very different from the prophylaxis therapies we are used to. People with bleeding disorders and their families must have all the information they need to make a fully informed decision as to whether or not to consider gene therapy.
This program offers a wide range of information in various formats: a booklet, webinars, podcasts, etc.
CLICK HERE to access the program’s webpage.
NOVEL THERAPIES EDUCATION PROGRAM
The CHS Novel Therapies Education Program provides people with bleeding disorders and their caregivers a basic understanding of novel therapies. This will help in shared decision-making with their health care providers when discussing and making treatment choices.
CLICK HERE to access the program’s webpage.
INTERNATIONAL TWINNING
The CHS values the initiative on the part of chapters and treatment centres to establish twinning partnerships to achieve our vison: “A world free from the pain and suffering of inherited bleeding disorders.” If your chapter or bleeding disorder treatment centre is interested in learning more about or wanting to begin a twinning partnership, please contact Natalie Philbert at the CHS.
The CHS International Twinning Program
International Projects Fund
Educational resources related to twinning
History of twinning partnerships
PEP – PARENTS EMPOWERING PARENTS
Parents Empowering Parents (PEP) is a program designed to promote effective parenting skills to parents of children with hemophilia, and to educate and support parents through classroom discussions and exercises. Written originally in 1995, the program has spread across the United States, and is has moved into the international bleeding community. Over a thousand parents have been through the program!
CLICK HERE for more details.
PASSPORT TO WELL-BEING
The Passport to well-being program provides people with bleeding disorders, at all stages of their lives, with information, skills and strategies to enable them to maximize their quality of life.
Passport to well-being is designed around five modules which focus on:
- Destination fitness
- Home care – The road to independence
- Roadmap for managing pain
- Navigating the emergency department
- Bon Voyage! Travelling with a bleeding disorder
CLICK HERE for all the details and to access the various booklets.
PROBE
PROBE (Patient Reported Outcomes Burdens and Experiences) is a multinational short questionnaire prepared by and for hemophilia patients, collecting information about the impact of hemophilia on daily life. This questionnaire looks at factors related to the patients’ health including demographics, lifestyle, health concerns and quality of life. National hemophilia patient organizations, including the Canadian Hemophilia Society (CHS), use this data to improve care for people with hemophilia.
CLICK HERE for more details.
CAREER PLANNING
FEDERAL AND PROVINCIAL SUPPORT PROGRAMS
INSURANCE COVERAGE
