Our purpose


Transform research, care and quality of life for children with dementia so they may live long and fulfilling lives.


Childhood Dementia Initiative is driving world first action for every child with dementia.

We are finding better ways to research and treat the 100+ disorders that lead to childhood dementia.

Through bold, innovative approaches and systemic change we are improving outcomes for children with dementia across the world.

No family should be left to watch their child suffer and die from dementia.

Our focus

Focusing on dementia, the commonality, rather than the underlying genetic cause will drive progress in therapeutic development and care for the 100+ genetic disorders as a collective.

Half of the children with dementia die by the age of 10 and 71% of children with dementia have a life expectancy of 18 or less. Care for these children and their families is often inadequate and inequitable. Why?


The 100+ rare genetic disorders are referred to, treated and researched in isolation.


When treated in silos there is insufficient knowledge of the problem and its impact.


When treated in silos there aren’t economies of scale. There is a lack of investment in therapeutic development and care.

Our strategic objectives

Awareness and education

We increase the awareness of childhood dementia and educate researchers, health professionals and families.

Advocacy and influence

We are the voice of childhood dementia, framing the conversation and ensuring we are heard wherever change is needed.

Facilitation and coordination

We bring great minds together to find solutions for childhood dementia and catalyse change.

Organisational sustainability

We build strong foundations in funding and governance to grow into a global, sustainable entity.

Our Impact

Equitable and quality care for children with dementia and their families.

Research is optimised to deliver effective treatments and improve the quantity.

The world knows childhood dementia exists and is unacceptable.

Our publications 

The State of Childhood Dementia 2022

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

Burden of disease study

The collective burden of childhood dementia: a scoping review, Brain, 2023. This study provides data on incidence, prevalence, mortality, age of onset and diagnosis. Greater clarity on the causes of childhood dementia was also gleaned. This study defines the 145 genetic disorders that cause childhood dementia.

‘We don’t fit’

Commissioned by Childhood Dementia Initiative and developed by international management consultancy, Nous Group, this report gives insight into family experiences of care and support services in Australia. 

For more, see our studies, findings, submissions and webinars.

Why now?

This is a time of unprecedented technological advancement and there is significant opportunity to apply this progress to childhood dementia disorders. This includes the fields of genomics, gene editing and gene therapy, artificial intelligence, synthetic biology and stem cell therapies.

Every month, more babies are born with disorders that lead to childhood dementia. We must find the answers, fast.

“We are living in the 21st century yet there is no cure. We are doing gene-editing, a man went to the moon, yet my child is dying from a condition known for 100 years – it’s unfathomable.”– Anna, mother of Sebby

“While the individual disorders may be rare, when we consider there are at least 70 conditions that present as childhood dementia, the incidence and impact on the health system and families is far greater than most people realise.”

“When we look at this constellation of diseases, identifying subsets with similar mechanisms empowers us to have learnings across individual diseases - achieving economies of scope and opportunities for impact across patient populations. By working under the umbrella of childhood dementia, there is tremendous potential to translate this research into therapeutics and diagnostics. It is such an innovation.”

-Tiffany Boughtwood, Board Director