Patients and families bring vital lived experience to research—shaping priorities, improving study design, and ensuring outcomes that truly matter. This session will explore meaningful ways to get involved in the research process, from idea generation to knowledge sharing. Hear from patient partners, researchers, and caregivers about how collaboration leads to more impactful and relevant research.
Sara Pot and Alicia Hilderley share the role of Patient and Family Engagement Facilitator for the RareKids-CAN Pediatric Rare Disease Clinical Trials and Treatment Network.
Sara Pot
Sara Pot is an educator, writer, facilitator, and parent of four, including two fantastic teens who require constant care specific to their rare diagnosis. Sara is involved with training and developing patient & family engagement strategies in health research and health practice; much of her work is with RareKids-CAN and CanChild’s Family Engagement in Research program.
Dr. Alicia Hilderley
Sara Pot and Alicia Hilderley share the role of Patient and Family Engagement Facilitator for the RareKids-CAN Pediatric Rare Disease Clinical Trials and Treatment Network.
Alicia Hilderley is a researcher who is passionate about patient & family engagement in clinical research. She works to promote and advance patient & family engagement in her own fields of research as well as in her roles as a patient partner. Alicia is also a postdoctoral fellow at the University of Calgary and an instructor with CanChild’s Family Engagement in Research program.
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