Research opportunity: Kids Advanced Therapeutics Lived Experience Engagement Project
Sydney Children’s Hospitals Network (SCHN) is inviting families and carers of children with rare diseases known to SCHN to share their perspectives on advanced and precision therapies, including emerging gene and RNA therapies.
The Kids Advanced Therapeutics Lived Experience Engagement Project (KAT LEAP) is exploring how families prefer to access and share information when considering advanced therapies, and how families would like to work with the KAT program as new therapies become available.
You do not need to have accessed an advanced therapy to be interested in participating. The project is seeking to hear from families who have an interest in advanced and precision therapies, including those who may access these therapies in the future.
KAT LEAP workshop
The first KAT LEAP workshop will be held:
Tuesday 20 October 2026
10:00am to 2:30pm
Kids Research, Westmead, NSW
Next to The Children’s Hospital at Westmead
The workshop will include two one-hour focus groups discussing:
- How families prefer to share and access knowledge when considering advanced therapies
- How families would like to work with the KAT program
Find out more and register your interest
For questions about the project, contact Janette Lee: [email protected].
More opportunities to get involved
This workshop is a pilot, with further opportunities for families to contribute to the KAT program planned as the work develops. Future engagement is expected to include virtual groups, providing opportunities for families from interstate to participate.
KAT also runs webinars with experts on advanced and precision therapies. These webinars are open to families across Australia, including those outside NSW.
Sign up for Kids Research updates and webinar information
