Calling Youth and Young People with PKU
Your voice. Your experience. Real impact.
Youth and young people living with phenylketonuria (PKU) are being invited to help co-create a new virtual resource designed to support young people as they transition toward adult care.
This is an opportunity to participate as a Youth Advisor and co-creator, not as a research study participant. Youth Advisors will work alongside other advisors, including healthcare providers, researchers and a PKU patient organization, to help determine what information the resource should include and what format would be most useful to young people with PKU.
Review the project explanation and Youth & Young People Advisors poster on the CanPKU+ website: View the project documents .
Why your voice matters
Adolescence and young adulthood can bring a growing responsibility for managing PKU care. Yet relatively few resources have been designed specifically with youth and young people in mind.
By sharing their experiences and ideas, Youth Advisors will help identify the challenges young people face, the information that matters most and how a resource can be made practical, relevant and engaging.
What will be involved?
Participation will take place virtually and includes:
- Pre-workshop meetings: approximately 2 hours total
- Co-creation workshops: two interactive virtual sessions of approximately 90 minutes each
- Review and feedback: approximately 2 hours to help revise and strengthen the resource
- Project wrap-up: approximately 1 hour to review the final resource and discuss possible next steps
During the project, Advisors will have opportunities to share what they believe are the biggest challenges for youth and young people with PKU, what information should be included and what type of resource would work best.
Compensation is available
Youth Advisors will be offered compensation for their time and contributions. Details will be provided to those who inquire about joining the project team.
Your contribution matters
Advisors will have the opportunity to choose how they would like to be acknowledged for their contributions to the co-created resource and any related documents or publications.
Interested or have questions?
Review the project information and poster, or contact Catherine Stratton to learn more about joining the project as an Advisor.
