Patient engagement:

• Pediatric rare disease clinical trials infographic (English and French)

• Youth engagement onboarding slides

• Patient engagement onboarding slides

• Meaningful engagement with patient partners

• Canadian Institutes of Health Research (CIHR) Co-Applicant Guide

• Working Together Agreement

Standard Operating Procedures:

• Terms of reference

• Values statement

• Publication policy

• Publication proposal form

Communications:

• Spring newsletter 2024

• Winter newsletter 2024

• Summer newsletter 2025

• Glossary of terms

Animation Videos:

• Pediatric rare disease clinical trials animation video (English and French)

• Exergaming clinical trial for spinal muscular atrophy video (English and French)

• Canadian PKU registry animation video (English and French)

• Canadian MPS registry animation video (English and French)