World's First Centre for Rare Dementia Support

The National Brain Appeal has supported Rare Dementia Support (RDS) since the first meetings in 1994. At the heart of RDS is a community of members who provide social and emotional support through a network of specialist support groups in London and in the nations and regions. The RDS community, which includes carers, works with the team at UCL's Dementia Research Centre to develop advice (information and practical help) for people living with rare dementias and to share that advice through direct phone contact and digital and traditional media. Our vision is to support all everyone living with or at risk of inherited, atypical and young onset dementias.

We are delighted to announce that in line with the expansion of Rare Dementia Support, the charity has committed to raise up to £7million to create the world's first centre of excellence for rare dementias. Please join us in raising £250,000 on JustGiving towards our target.

The Rare Dementia Support Centre will exemplify the best in support for people living with a diagnosis or at risk of an inherited condition and everyone who cares for or about them. The Centre will also pioneer the development of support by promoting research into the experiences of people living with rare dementias (including into the impact of support services), and the bespoke education of families, healthcare and other relevant professionals.

The new centre has three key aims:

1. Support: guide and empower people living with rare dementias and their families.

2. Educate and train professionals (such as speech therapists, nurses, physiotherapists, opticians and GPs) who work with people living with rare dementias.

3. Research into the impact of support services on people living with rare dementias: both for people with a diagnosis, and for their carers and families.

Additionally, there will be dedicated spaces for physical, artistic and cultural activities. Live streaming of the education, training and support work taking place in the centre will help to increase its reach and impact. RDS has collaborated with people affected by rare dementia to design a new digital service, offering support, advice and learning.

Please visit our website to find out more about the fund for Rare Dementia Support. You can find out more about Rare Dementia Support service here: raredementiasupport.org