Events
Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.
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A Conversation About Patient Partner Outsider Syndrome
Patient/caregiver partnership in health research has evolved substantially since the launch of Canada’s Strategy for Patient-Oriented Research (SPOR) over a decade ago. However, findings from the Patient Advisors Network (PAN) “Reimagining the Research Landscape” report, commissioned by CIHR in 2024 for the SPOR Refresh, revealed that patient/caregiver partners often feel like outsiders in the research ecosystem. This webinar will take a deeper dive into the OSSU Research Day presentation “Why do patient/caregiver partners feel like outsiders?”
Ms. Maureen Smith will moderate a frank discussion between two of the report authors, Mses. Alies Maybee and Annette McKinnon, and PAN Board member Ms. Sandra Holdsworth, and leading patient-oriented researchers Drs. Manoj Lalu, Ambreen Sayani and Stuart Nicholls, on the barriers uncovered by the report and showcasing best practices to mitigate these barriers.
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