# Patient and Family Engagement Patient and family engagement Patients and families bring critical expertise through lived experience. We help create opportunities for meaningful collaboration and invaluable insights across research activities, ensuring that research priorities, processes, and outcomes better reflect the needs of the communities they serve.  We are 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 trial research. As partners with lived experience, our hope is to build capacity, promote community, and support meaningful youth, patient and family engagement. Impact Our work aligns with RareKids-CAN's three strategic priorities, helping to ensure that youth, patient, and family perspectives are reflected and integrated across the network's activities and future directions. Our core values Our core values are influenced by CanChild Family Engagement in Research Program What we do We promote Partnership Across the Network: We are a community of youth, patient, and family partners who support engagement in ways that are thoughtful, meaningful, and connected to the priorities of the network. Our work aligns with RareKids-CAN’s three strategic priorities, helping to ensure that youth, patient, and family perspectives are reflected and integrated across the network’s activities and future directions. Mutual respect and equity Youth, patients, families, researchers, and clinicians are recognized as equally valuable contributors. Meaningful partnership Engagement goes beyond token participation. Youth, patients and families are invited to contribute at levels that match their interests, capacity, and goals. Compassion and community Relationships are grounded in empathy, trust, and belonging. Impact through collaboration Research and engagement activities are guided by the shared goal of improving outcomes and quality of life. RareKids-CAN's engagement community leads Andrea Cross Read Bio Andrea Cross is an Assistant Professor in the Department of Pediatrics at McMaster University and Co-Founder of CanChild Family Engagement in Research Program, an international training program dedicated to training, mentoring, and mobilizing the next generation of advocates, champions, and leaders in family engagement in child health research. Sara Pot Read Bio Sara Pot is a parent of four, including two fantastic teens who require constant care specific to their rare diagnosis. She helps to lead the engagement community for RareKids- CAN as an educator and facilitator with CanChild Family Engagement in Research Program and holds certification with The Center for Implementation. Sara also holds several volunteer consultation roles in pediatric and adult health care systems. Alicia Hilderley Read Bio Alicia Hilderley is a postdoctoral fellow at the University of Calgary, a family engagement facilitator with RareKids-CAN and an educator with the CanChild Family Engagement in Research Program. Her research focuses on the design, evaluation, and implementation of child-centred neurorehabilitation interventions in collaboration with family partners and multi-disciplinary teams. What does engagement look like? Attending Coffee Chats and Community Meetings Accessing updates and resources via the network newsletter and our community resource board collections Partnering on short-term projects and one-time opportunities Consultation or advising via surveys and focus groups Partnering on longer-term projects across network programs and activities Joining a sub-platform to help plan, support, collaborate, or co-lead projects and activities Participating in engagement and presentation opportunities connected to network "Engage patients and family members as equal partners and valued members of the research team" Canadian Institutes of Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) (2011) Community resource board Explore a collection of resources curated by patients and families to share helpful information and experiences to support your journey in research and navigating the rare disease landscape. These resources have not undergone the same review process as RareKids-CAN’s educational tools, and resources and are provided for informational purposes only. Explore community resource board Learn more To learn more about about RareKids-CAN youth, patient, and family engagement work, email rkengage@mcmaster.ca