People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• December 2022

This study explored whether exposure to either an ‘ambiguous consumption’ prototype (no amount of alcohol specified) or a ‘small consumption’ prototype (‘small’ amount of alcohol specified) had an impact on prototype perceptions of, and willingness to use, small amounts of alcohol during pregnancy. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• November 2022

School bullying is a public health concern affecting the physical and mental health of children and young people. While school-based interventions to prevent bullying have been developed internationally, the effectiveness of many interventions has been mixed and modest. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• October 2022

To compare quality of life (QOL) across diagnoses associated with intellectual disability, construct QOL profiles and evaluate membership by diagnostic group, function and comorbidities. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• October 2022

This study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• October 2022

Research has shown that parents of trans children face numerous challenges as they navigate their parenting role, however, little is known about the impact of these challenges on parents’ psychological wellbeing. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• October 2022

Liz Tim Davis Jones EA TW MBBS FRACP PhD MBBS DCH FRACP MD Head, Chronic & Severe Diseases Research Focus Area; Clinical Lead, Diabetes and Obesity ...

• 1. Telethon Kids Institute
• Our research
• Chronic and Severe Diseases
• Diabetes, Metabolism and Clinical Sciences
• Diabetes and Obesity Research
• Expired Projects

Language key to autism inclusivity We know words matter and now new research looking at autism terminology has shone the spotlight on what autistic ...

• 1. Telethon Kids Institute
• Our research
• Research Impact
• 2023
• Research translation

Study offers brighter future for Alex Did you know? Even before he was born Alex Chatterton was already doing his bit to help find a cure for type 1 ...

• 1. Telethon Kids Institute
• Our research
• Research Impact
• 2023
• In the pipeline

Tim Liz Jones Davis TW EA MBBS DCH FRACP MD MBBS FRACP PhD Co-head, Diabetes and Obesity Research Head, Chronic & Severe Diseases Research Focus Area ...

• 1. Telethon Kids Institute
• Our research
• Chronic and Severe Diseases
• Diabetes, Metabolism and Clinical Sciences
• Diabetes and Obesity Research
• Expired Projects