Who we are

Rare Dementia Support (RDS) is a world-leading, UK-based service provided by the UCL Dementia Research Centre (DRC) and partners and funded by The National Brain Appeal.

RDS supports people affected by 7 of the rare dementias including carers and bereaved carers. These are: Familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and Young-onset Alzheimer’s disease (YOAD).

The RDS team comprises of international clinical and non-clinical specialists and people affected by rare dementias, collectively working together to bring their skills and expertise in dementia research, education and support.

We have a dedicated Direct Support Team who provide free information, advice and support for RDS members; helping from pre-diagnosis navigation through to post-bereavement support.

We’ve made an advert about RDS, please do feel free to pass the link on to family, friends and anyone you know who is interested in the experiences of those living with rare dementia and the support RDS provides. You can also find this video and lots more on the RDS YouTube channel.

What we do

Advice. Community. Learning

Between 5% and 15% of people living with a dementia receive a diagnosis of a rare, inherited or young onset dementia. The diagnosis of a rare dementia brings with it a set of unique and complex challenges which can include difficulties with vision, language, movement and behaviour.

However, there is a widespread lack of understanding and a shortage of dedicated resources to support people affected by rare dementias.

Rare Dementia Support (RDS) aims to empower, guide and inform people living with a rare dementia diagnosis and those who care about them. Combining social, emotional and practical support with research and training about rare dementias, we are working to increase awareness about these conditions so that everyone affected by rare dementias feels better supported in their communities.

We run support groups that bring people together to share their experiences and provide a Direct Support Team, who are available by email, telephone and video call. We endeavour to listen to and discuss situations with empathy, respect and professionalism. Find out how best to contact us.

Our vision is for everyone affected by, or at risk of a rare dementia, to have access to information, tailored support and guidance, and contact with others affected by similar conditions, in a space of mutual respect, community and understanding.

The story of Rare Dementia Support

The Rare Dementia Support we see today began life as a single rare dementia support group, founded in 1994 as a nurse-led service designed to support people affected by one rare dementia – frontotemporal dementia (FTD).

Based at the world-leading Dementia Research Centre (DRC), part of the UCL Queen Square Institute of Neurology in London, the work of the support group was closely linked to clinical practice at the DRC and designed to support DRC patients and their carers.

There was a clear need for support for people living with other forms of rare dementias. The Myrtle Ellis Fund was established by a supporter of The National Brain Appeal charity. This fund was held by the charity to support those living with posterior cortical atrophy (PCA). This expanded quickly and, with direction from the DRC and additional funding from the The National Brain Appeal (TNBA) and The Discworld Foundation (Terry Pratchett’s Foundation), the long-standing FTD Support Group and The Myrtle Ellis Fund merged together. This grew to support 3 additional support groups– primary progressive aphasia (PPA), familial frontotemporal dementia (fFTD) and familial Alzheimer’s disease (FAD).

In 2015, the DRC and TNBA established an advisory committee for the support groups, to provide strategic direction and coordinated fundraising. The committee brought the 5 support groups together to form what we recognise today as Rare Dementia Support (RDS) and the fund for this was launched on Rare Disease Day the following year, 29 February 2016. In 2018, the Lewy Body Dementia (LBD) Support Group was also incorporated and in 2021 the Young-onset Alzheimer’s Disease (YOAD) Support Group was launched.

We now provide services for over 10,000 members across 7 rare dementia groups all across the UK, and have now extended our reach worldwide. In 2026 we opened The Hilary and Galen Weston Rare Dementia Support Centre, a new home for the RDS team and our members.