Rare Dementia Support (RDS) offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis. More than 9,800 people are currently supported across the UK and beyond.

The National Brain Appeal has supported RDS since the first condition specific support group meetings more than 30 years ago. The charity also led a £10m fundraising appeal to support the creation of a new permanent home for the service – The Hilary and Galen Weston Rare Dementia Support Centre – which will open in early 2027.

The National Brain Appeal supports RDS’ vision 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.

There are seven types of rarer dementia supported by the RDS service:

· Frontotemporal dementia (FTD)

· Posterior cortical atrophy (PCA)

· Primary progressive aphasia (PPA)

· Familial frontotemporal dementia (fFTD)

· Familial Alzheimer’s disease (fAD)

· Dementia with Lewy Bodies (LBD)

· Young Onset Alzheimer’s Disease (YOAD)

For more information about these conditions and the support available, visit Rare Dementia Support or read our latest information leaflet.

Services currently being offered include: large diagnosis-specific support group meetings; carer-only meetings; bereaved carer meetings and participation in non-clinical research opportunities. The service makes thousands of support calls to individuals each year and hosts hundreds of meetings.

The National Brain Appeal has committed to continue raising £500,000 a year to fund the RDS direct support team and other staff roles, development of professional education programmes and community learning, and a range of ongoing cultural and artistic activities, as well as running costs of the new centre.

All this groundbreaking work is only possible thanks to your generosity.