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    Childhood Dementia: We Don't Fit Report (online)

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    Childhood Dementia: We Don't Fit 

    Childhood dementia affects 1 in 2800 babies born in Australia – more than better known conditions like cystic fibrosis. Sadly, around 75% have a life expectancy of under 18. They and their families face unique and complex challenges.

    Childhood Dementia Initiative invites you to join this one-hour session to unpack the recent report - ‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services.

    Developed by international management consultancy, Nous Group, this report gives insight into ‘typical’ family experiences navigating care and support services in Australia. It revealed that families affected by childhood dementia experience significant challenges accessing appropriate care.

    This free session is ideal for health professionals and social care workers, researchers, parents, educators and policy makers, and anyone else who would like to gain a better understanding of the experiences of families impacted by childhood dementia. 

    Can't make this one but want to attend an information session?

    Get in touch here and we’ll let you know about upcoming sessions.

    About the Childhood Dementia Initiative:

    Childhood Dementia Initiative is driving world-first action for every child with dementia. We are finding better ways to research and treat the 70+ conditions that lead to childhood dementia. Through bold, innovative approaches and systemic change we are improving outcomes for children with dementia across the world.

    Childhood Dementia Initiative’s leadership, Board, and advisory committees represent both lived experience and extensive professional experience across rare, chronic and terminal disease. Cross-disciplinary experts from research, healthcare, social services and policy are engaged to drive change through strategic collaboration and the organisation is guided by the voices of families who have children with dementia.

    You can find out more about Childhood Dementia Initiative and donate at

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