Rare Dementia Support Service
Rare Dementia Support (RDS) offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis.
Rare Dementia Support (RDS) offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis. Our vision is for all individuals with, at risk of or supporting someone with one of these forms of dementia to have access to information, tailored support and guidance, and contact with others affected by similar conditions. RDS welcomes people from all areas of society affected by a rare dementia regardless of gender, age, marital or family status, race, ethnicity or sexual orientation.
Rare Dementia Support provides holistic support for people living with rare dementias and their families, through one-to-one, small group and large group support services at every stage of a rare dementia diagnosis. We also provide education and training for professionals working with people living with rare dementias, as well as resources to raise awareness and increase understanding, and we pioneer research into individual and group support and into strategies and interventions for people with a diagnosis and their care partners and families.
For more information about RDS services, news and information, and the dementia diagnoses we currently support, please visit the RDS website.
Rare Dementia Support Centre opening
We’re delighted to announce that The National Brain Appeal’s £7million fundraising campaign to help us create the world’s first specialist centre for people with rare forms of dementia has moved a step closer with the purchase of two interconnected buildings in London’s Woburn Square.
Securing the buildings has been made possible thanks to a £2.7m donation from The Hilary and Galen Weston Foundation. Garfield Weston Foundation donated £2.25m. Iceland Foods Charitable Foundation and Iceland Foods stores also raised £1.1m towards the centre following a charity partnership with The National Brain Appeal and a pledge from Sir Malcolm Walker. Rosetrees Trust, also an early supporter of the project, is making a £250,000 donation that the charity will match through the vital fundraising activities of many RDS members and their families.
The renovation of the buildings, designed by Hawkins\Brown architects, will blend lived and professional experience in a welcoming, informal environment. A substantial kitchen will sit at the heart of the centre, with lounge areas for larger group discussions and smaller rooms for conversations between individuals, families and advisers and therapists. There will also be dedicated spaces for physical, artistic and cultural activities. IT pods, booths, and audiovisual equipment will enable phone consultations, live streaming and recording to increase the reach of meetings and training sessions. The centre will lead in the provision of education on rare dementias for families, as well as health and social care professionals.
The centre, near to the Dementia Research Centre at UCL Queen Square Institute of Neurology, is expected to officially open in 2027.
More information about The National Brain Appeal’s campaign and the importance of the centre at UCL can be found here: