Strengthening Family Engagement Capacity Through the Family Engagement in Research Course

Patients and families are central to RareKids-CAN and our work. As part of our commitment to Strategic Priority 1: Enhancing Capacity, RareKids-CAN sponsored a dedicated cohort of learners in CanChild McMaster University’s Family Engagement in Research (FER) Course.

Facilitated in partnership with RareKids-CAN Patient & Family Sub-platform Leads Sara Pot and Alicia Hilderley and three current RareKids-CAN research and family partners (all FER Course graduates), the cohort brought together 26 individuals from across Canada’s pediatric rare disease community. This included people with lived experience, families, clinicians, and researchers, all with a shared focus on strengthening pediatric rare disease clinical trials.

As Sara Pot reflected, “It was energizing to be part of a group connected through pediatric rare disease. Learning from the teaching team of FER graduates who are already contributing within the RareKids-CAN network made the experience even more impactful.”

Course Learning in Action

Throughout the program, participants explored approaches to integrating lived experience across the research lifecycle. Topics included:

• principles and models of family engagement in research

• roles and responsibilities of researchers and individuals with lived experience

• barriers and facilitators to family engagement in research and identify strategies to support

• ethical considerations in engagement

• sustaining meaningful collaboration across projects

Over 10 weeks of the course, learners worked in small interdisciplinary groups to co-create a resource on family engagement in pediatric rare disease research. This hands-on component helped translate theory into practice and strengthened relationships across roles and institutions.

Outcomes for Participants and the Network

Participants described the experience as both professionally and personally meaningful, highlighting how engagement improves the relevance and accessibility of research.

“The FER course was such an incredible experience to blend my personal and professional development into learning and changing the landscape of research for families like my own…” - Marissa Sangers

Marissa Sangers, parent partner with Cassie + Friends, shared: “The FER course was such an incredible experience to blend my personal and professional development into learning and changing the landscape of research for families like my own and the families I serve every day. So grateful for the opportunity and the connections that I made!”

“I learned how family input can improve clarity, accessibility, and real-world relevance of research materials.” - Humaria Ahmed

Humaria Ahmed, a Clinical Trial Navigator with RareKids-CAN, noted, “RareKids-CAN’s sponsored cohort of CanChild’s FER course taught me the importance of integrating family perspectives to ensure research is meaningful and relevant. Through activities such as developing a rare disease registry infographic, I learned how family input can improve clarity, accessibility, and real-world relevance of research materials.”

Overall, the course strengthened a growing national community equipped to support meaningful family engagement in pediatric rare disease clinical trials. Initiatives like this continue to ensure that lived experience remains at the heart of research design.

Learn more about the Family Engagement in Research Course here.