Patient and Family Partnership
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The RareKids-CAN network has a Patient and Family Engagement Sub-Platform dedicated to supporting the integration of diverse children, youth, and families with lived and living experiences of pediatric rare diseases across the network and in clinical trials research. This sub-platform builds capacity, promotes community, and supports meaningful patient and family engagement.
Children, adolescents, young adults and their families engaged within the RareKids-CAN network are partners across network sub-platforms. Their expertise is highly valued to ensure network activities are patient- and family-centred.
Children, adolescents, young adults and their families also engage in clinical trial research projects. Their level of engagement can range from a short consult to a long-term partnership on a research team. We emphasize meaningful and active collaboration in all activities. Examples of activities include the selection and refinement of research questions and priorities, planning and conduct of clinical trials, and sharing trial results.
To learn more about this and how you can get involved, please contact Sara and Alicia, the Patient and Family Engagement Sub-Platform Facilitators at rkengage@mcmaster.ca
Who We Are
We are a collective of 40+ youth, caregivers, parents and individuals committed to supporting the vision of RareKids-CAN. We have experience that helps amplify and expand the influence of RareKids-CAN in the field of pediatric rare disease and clincial trial research. We are led by:
Alicia Hilderley
Alicia Hilderley, a postdoctoral fellow at the University of Calgary, a family engagement facilitator with RareKids-CAN and an educator with CanChild’s Family Engagement in Research Course. Her research focuses on the design, evaluation, and implementation of childcentred neurorehabilitation interventions in collaboration with family partners and multi-disciplinary teams.
Sara Pot
Sara Pot, a parent of 4; her younger two have a rare diagnosis. She is an educator and facilitator involved with teaching and coordinating CanChild’s Family Engagement in Research Course and a family engagement facilitator with RareKids-CAN.
Winter 2026 cohort:
CanChild and McMaster University's Family Engagement In Research Course & RareKids-CAN
To further the work of community building within the pediatric rare disease community, RareKids-CAN is sponsoring a second cohort of learners. This Winter 2026 sponsored cohort will bring together those who share an interest in or are affected by pediatric rare disease research, including patients, families, researchers, and trainees. Together, we will discuss and develop ideas that will help promote meaningful engagement. We'd love to have you join us!
Fall 2024 cohort:
CanChild and McMaster University's Family Engagement In Research Course & RareKids-CAN
To build connection within the pediatric rare disease community, RareKids-CAN sponsored a cohort of learners in the fall of 2024 and brought together those who shared an interest in or are affected by pediatric rare disease research, including patients, families, researchers, and trainees. Together, we discussed and developed ideas that will help promote meaningful engagement. Check out one of the tools by viewing the below video created by learners in our cohort!