Patients and Families
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Our family engagement facilitation support provides training and resources to equip both researchers and family partners in building strong, meaningful collaborations. We focus on developing shared understanding, skills, and tools that strengthen engagement throughout all stages of pediatric rare disease research, helping teams work together toward better outcomes for children and families.
Our Patient and Family Partners have an active list of resources, these include:
Curious to learn more about training and other communities passionate about pediatric rare disease? Explore our collection of ideas that's capturing our attention. Have a suggestion for our collection?
Email us at: rkengage@mcmaster.ca
Link: https://wakelet.com/wake/GD4GLRHyI8DV-n5FLG4gt
Curious to learn more about pediatric rare disease publications? Explore our collection of ideas that's capturing our attention. Have a suggestion for our collection?
Email us at: rkengage@mcmaster.ca
Link: https://wakelet.com/wake/P_UODLbycDCId3KDEsmiZ
Curious about helpful tools, decision aids and resources specific to pediatric rare disease? Explore our collection of ideas that's capturing our attention. Have a suggestion for our collection?
Email us at: rkengage@mcmaster.ca
Link: https://wakelet.com/wake/Bwc8OksYLEQF9KQjbKF1F
Family Engagement Fundamentals
As part of our training support for the RKC network, we offer one hour information sessions that highlight key concepts when engaging with youth, families and individuals in pediatric rare disease research.
Coffee Chats
Join us online for a coffee chat. This is a chance to meet with others who are impacted by pediatric rare disease. Many of us are parents and caregivers who appreciate the time to connect and learn together. We meet online via Zoom and there are two time options for you to choose: 2 P.M. EST or 8 P.M. EST.
Upcoming Dates:
December 16: What does this time of year look like for your family?
January 8: Hear from lived experience!
Future Dates:
February 12 | March 12 | April 16 | May 14