# Patients and Families Partnering with families through research RareKids-CAN works to improve access to pediatric rare disease clinical trials for children, youth and families across Canada. We believe patients and families are essential partners in advancing knowledge and play a critical role in shaping better treatments, systems and outcomes. Whether you are exploring opportunities to participate in a study, to partner in research or looking to better understand the pediatric rare disease landscape, we are here to connect children, youth and families with trusted information, resources and opportunities to get involved. 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. Our core values Our core values are influenced by CanChild Family Engagement in Research Program. 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. From participation to partnership Explore trusted resources developed by RareKids-CAN experts to help you understand research, learn about clinical trials, and navigate the pediatric rare disease journey with confidence. Browse our resources Search active pediatric rare disease clinical trials in Canada by condition to explore study details, eligibility criteria, and contact information. Use our clinical trial database to find trials that may be relevant to you or your child. Discover ongoing pediatric rare disease clinical trial opportunities RareKids-CAN supports initiatives that advance access to therapies, reduce barriers, and improve the pediatric rare disease research ecosystem in Canada.  Patient registries collect information about people living with a specific rare disease to support research, improve care, and advance new therapies. Browse available registries to find one that may be relevant to you or your child. Find a Registry Patients and caregivers contribute directly to RareKids-CAN initiatives, helping shape research projects, tools, and initiatives.  Learn more We offer information sessions and resources that highlight key concepts when engaging with youth, families and individuals in pediatric rare disease clinical trials research. Explore a curated collection of external resources, tools, and supports shared by the RareKids-CAN Patient & Family Engagement Sub-platform to help strengthen meaningful patient and family engagement in research. Explore a few ideas here: View Family Engagement Fundamentals (pdf) Contact the Patient and Family Engagement Sub-platform Connect with a national network of patients, caregivers, advocates, researchers, and clinicians working together to improve outcomes for children with rare diseases through research and collaborations.   View our collaborators 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. Note that these resources are external to our network. We provide them for informational purposes only. Explore community resource board Patient and family engagement RareKids-CAN works to improve access to pediatric rare disease clinical trials for children, youth and families across Canada. We believe patients and families are essential partners in advancing knowledge and play a critical role in shaping better treatments, systems and outcomes. Whether you are exploring opportunities to participate in a study, to partner in research or looking to better understand the pediatric rare disease landscape, we are here to connect children, youth and families with trusted information, resources and opportunities to get involved. 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 team 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) Coffee chats Members of the RareKids-CAN Patient & Family Engagement team facilitates a regular virtual meetup for those impacted by pediatric rare disease. Coffee chats are informal, drop-in video conversations that bring together children, youth, families, caregivers, and others impacted by pediatric rare disease from across Canada. Whether you're looking to connect, share experiences, ask questions, or simply listen, you're welcome to join us. Upcoming Dates: TBD Email Sara Pot to learn more: rkengage@mcmaster.ca Our Commitment to Patients & Families We are committed to creating research systems that are collaborative, inclusive, and centred around the needs of children and their families.   While RareKids-CAN does not provide medical care, counselling, or peer support groups, we aim to help families access research-related information, opportunities, and connections within the pediatric rare disease community.  Featured resources for patients & families 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's 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's 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. Learn more To learn more about about RareKids-CAN youth, patient, and family engagement work, email rkengage@mcmaster.ca Have Questions? RareKids-CAN is here to help. If you can’t find answers to your questions in our FAQs, please don’t hesitate to contact us. View our FAQs Contact us