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Patients, families and living donors improving the organ donation and transplantation system in Canada

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 asked over 1,000 transplant recipients, caregivers and living donors from across Canada to share their lived experience of the organ donation and transplantation (ODT) system through an online survey and a set of focus groups.

We'd like to thank everyone who participated in this important work.

We’ve learned that for people on a transplant journey, mental health support, financial support, and coordination of care are important concerns. Patients, families and living donors pointed to these three categories when talking about how to improve the ODT system in Canada. The final results of this project, including the recommendations that came from these discussions, will soon be posted on this page.

In the meantime, if you're trying to navigate the transplant system in Canada and you need information, visit the CDTRP Patient Portal or 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.