Our publications 

State of Childhood Dementia 2022 report

This report explores the current state of childhood dementia across policy responses, research progress and the support available for children and families.

Childhood Dementia Global Landscape Analysis

The Global Landscape Analysis Report prepared by Research Australia gives a global picture of childhood dementia clinical research.

Symposium Outcomes Report

Details the outcomes of the Challenging Childhood Dementia Symposium held on 1 March 2022.

Palliative Care Roundtable Communique

Key issues and comments that emerged from the consumer roundtable co-hosted by Palliative Care Australia and Childhood Dementia Initiative on 24 November 2021.

White paper

Our white paper, Childhood Dementia: the case for urgent action highlights the size, scale and wide-reaching impacts of childhood dementia.

Burden of disease study

The burden study prepared by THEMA Consulting, Childhood Dementia in Australia,  quantifies the burden of childhood dementia on patients, carers, the healthcare system and our society.

Presentations and Posters

Poster presentation

Presentation delivered by Head of Research, Dr Kris Elvidge PhD, at the Australian Dementia Forum in June 2021.

HealthData21 conference presentation

Sliding Doors: What Happens When Genomics Isn’t Integrated into Healthcare, was delivered by Childhood Dementia Initiative CEO, Megan Donnell at the HealthData21 conference in May 2021.

WORLD Symposium presentation

Head of Research, Dr Kris Elvidge PhD, presentation at WORLD Symposium in February 2021. The Symposium is the annual international research conference for lysosomal diseases.