Understanding rare dementias. Transforming care.

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What are rare dementias?

Alzheimer's disease is the most common type of dementia, but there are many other conditions that can lead to dementia. These conditions are rarer, can occur at a younger age, and can cause symptoms that are not only memory-related. These may include difficulties with vision, language, movement, and behavioural changes. Current healthcare systems are not set up to respond to these different dementias, their complexity and atypical presentations. Specialist information and tailored support can help people and families plan, navigate diagnosis and manage daily life.

Our collaborators

Together, these organisations bring global insight, deep expertise and shared humanity to some of the most complex and least understood dementias.

Rare Dementia Support UK

A University College London (UCL)-led collaborative service that aims to empower people living with a rare dementia diagnosis and those who care for and about them.

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Rare Dementia Support Canada

Rare Dementia Support Canada provides a tailored specialist support community for people who are living with, affected by or at risk of, a diagnosis of rare dementia.

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Australian Frontotemporal Dementia Association

A registered non-profit organization dedicated to supporting individuals and families affected by frontotemporal dementia (FTD).

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Dementia Support Australia

A free, Australian Government-funded national service led by HammondCare that provides 24/7 specialized support for people living with dementia and their carers.

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FRONTIER Brain and Mind Centre

Australia’s leading specialist research clinic and group dedicated to Frontotemporal Dementia (FTD), based at The University of Sydney's Brain and Mind Centre .

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Help us shape this space

Our goal is to better support people living with rare dementias, their families, carers and the professionals who support them.