Patients and Families

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.