What is the project about?
This project aims to fill a critical gap in the support of parents of children with genetic neurodevelopmental conditions. Our consumer-led research project seeks to co-design a digital tool to better equip parents to receive balanced, strengths-based information about the child informed by the lived experience of other families.
Who is running the project?
Dr Erin Turbitt, a Senior Lecturer and researcher in the Discipline of Genetic Counselling at the University of Technology Sydney is leading this project. The project is supported by a team of eight Chief Investigators with diverse expertise including lived-experience, clinical genetics and paediatrics.
Who is funding the project?
The study is funded by the Australian Government’s Medical Research Future Fund (MRFF) Preventive and Public Health Research Initiative - Consumer-Led Research from January 2025 to December 2027.