A

World-First

Centre

Offering

Hope,

Support,

and

Vital

Resources

for

People

and

Families

Affected

by

Rare

Dementia

Living with a rare dementia diagnosis can be an isolating and overwhelming experience for the estimated 70,000 to 100,000 individuals affected in the UK. These conditions are not only under-researched, under-supported and often misdiagnosed but also lack adequate specialist support, leaving many people and their families without guidance or resources tailored to their unique challenges.

To address this significant gap, University College London (UCL), in collaboration with Rare Dementia Support (RDS) and The National Brain Appeal, is establishing a world-first center, set to open in 2026.

The new purpose-built facility will serve as the permanent home for RDS, providing individuals and families across the UK with greater access to specialist social, emotional, and practical support services in an environment designed around their needs. Beyond expanding support services, the center aims to drive forward research and education on the distinctive and complex challenges faced by those living with rare and early-onset dementias, ultimately improving lives and fostering greater understanding nationwide.

The acquisition of the property in central London, which will serve as the center’s permanent location, was made possible thanks to a generous £2.7 million donation from The Hilary and Galen Weston Foundation to UCL. This contribution was a part of a £9.9 million capital appeal led by The National Brain Appeal in support of the new centre.

In recognition of the Foundation’s generous contribution, the centre will be named The Hilary and Galen Weston Rare Dementia Support Centre.

Professor Nick Fox, a leading expert in young-onset and rare dementias, a co-director of Rare Dementia Support and director of UCL Dementia Research Centre, is spearheading the initiative after more than 30 years working with patients and families impacted by rare and early-onset dementias – some of them as young as 23 years old.

The Hilary and Galen Weston Rare Dementia Support Centre is expected to support 10,000 patients, family members and professionals across the UK in its first year.

To learn more about The Hilary and Galen Weston Centre for Rare Dementia Support and the critical gap it aims to fill, check out the articles below:

Rare Dementia Support: World-first dementia centre to be named to honour philanthropic visionaries

The Telegraph (UK): I’ve treated 20-year-olds with dementia. These are the early warning signs