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Improving the organ donation and transplantation system in Canada

Take each day as a lesson; in courage, in believing and in living.
- Randy S., kidney transplant recipient

Navigating the health care system can be challenging and confusing when you're feeling well. For people on a transplant journey, it can be even more difficult. That's why we've asked transplant recipients, caregivers and living donors from across Canada to help us understand their lived experience of the organ donation and transplantation (ODT) system.

The name of our project is Improving Engagement and Empowering Patients on Their Transplant Journey, and our goal is to develop recommendations for improving the ODT system from your perspective as members of the transplant community. We hope to help change the landscape for people on a transplant journey and those who support them. The recommendations we put forth will be presented at both the Provincial/Territorial level and the national level next spring.

Along the way, we're looking to empower people by helping them find the transplant resources they need. If you're trying to navigate the transplant system in Canada and you need information, email our research team for personalized help.
 

Personal Stories

Karen, a living kidney donor, talks about her family's transplant experiences


Suraj shares his pre-transplant experience


 

Suraj shares his post-transplant experience


 

Sandra H., liver recipient in February 1997, shares her experience

Sandra H. liver recipient
My transplant journey began in April 1992. After several years of not feeling well, a new doctor ran every blood test that she thought might lead to a diagnosis. Those results came back showing high liver numbers and I was referred to the Toronto General Hospital Liver Disease Clinic....

Read Sandra's story (.pdf)









  • About the Project
    This survey is part of a project by the Patient/Advocate Advisory Committee (PAAC) of the Organ Donation and Transplant Collaborative (ODTC). Coordination and support for the committee and the project is being led by The Kidney Foundation of Canada.
  • About the Patient/Advocate Advisory Committee (PAAC)
    The Patient/Advocate Advisory Committee is made up of a dedicated group of patients and caregivers who want to help make sure the organ donation and transplantation system meets the needs of the people who depend on it most. The PAAC seeks to support patient and advocate voices, provide representation and improve patients’ experiences as they navigate the organ donation and transplantation system in Canada.
  • About the Organ Donation and Transplantation Collaborative (ODTC)
    Since 2018, Health Canada has been leading an initiative called the Organ Donation and Transplantation Collaborative (The Collaborative) with provinces and territories (except Québec), Canadian Blood Services (CBS), patients, families, clinical and administrative stakeholders and researchers. Working together, we will continue to improve our system and ensure that Canadians have timely and effective access to quality donation and transplantation services.  The Collaborative’s goal is to achieve organ donation improvements that result in better patient outcomes and an increase in the number and quality of successful transplantations.

    This project is funded by Health Canada as part of the Organ Donation and Transplantation Collaborative (The Collaborative). For more info, click here. 

Sponsors and Supporters

In addition to The Kidney Foundation of Canada, the following organizations are sponsors and supporters of the project.