How is Rare Dementia Support funded?

Our work at Rare Dementia Support (RDS) is funded directly by the National Brain Appeal, which is the charity dedicated to supporting the work of The National Hospital for Neurology and Neurosurgery and the Institute of Neurology in Queen Square, London.

To maintain and develop our work on Rare Dementia Support we aim to raise £100,000 every year. We are grateful to our loyal supporters for the energy, passion and commitment that they put into to raising money for RDS. We also benefit from the generosity of legacies, trusts and foundations who share our vision and recognise and value our work.

To make a donation

  • Visit our page JustGiving webpage and click ‘Donate’.
  • Text RDSF84 plus the amount you would like to donate (e.g. £5) to 70070
  • Write a cheque payable to “National Brain Appeal – Rare Dementia Support” and post it to: The National Brain Appeal, Box 123, Queen Square, London WC1N 3BG.
  • Contact The National Brain Appeal on 020 3448 4724 for details about how to donate by bank transfer

If you have an idea for fundraising, we’d love to hear from you! Please get in touch with the National Brain Appeal: 020 3448 4724 or email


Copies of all our Fundraising Newsletters can be found here


Funding News

Marie’s story

Marie has been diagnosed with a rare form of early-onset dementia and she attends meetings organised by Rare Dementia Support. To help others affected by her condition she and her husband Mark are working with Rare Dementia Support in a number of ways. Marie is taking part in research carried out by the Dementia Research Centre, and Mark has been fundraising for The National Brain Appeal (which funds Rare Dementia Support) by running the London Marathon and submitting artworks to the National Brain Appeal campaign A Letter in Mind. Find out more about her story in the video below.


Kell’s Ride for the Future, a spotlight on Young Onset Dementia

In 2016, at the age of 59, Greg Kelly, was diagnosed with Young Onset Dementia – Frontotemporal Dementia (FTD). Greg embarked on a journey to raise awareness of Young Onset Dementia (YOD) by riding a Harley Davidson the length and breadth of Australia. After completing the 11 week ride in October 2017,  he started preparing for another ride in New Zealand in 2018.  In 2019 he plans to ride the length and breadth of USA , and he would like to do the same in Great Britain in 2020.

Film maker Elizabeth McLeish has produced a short documentary about Greg, called ‘Kell’s Ride’. She is accompanying Greg on hisNew Zealand ride while working on a feature-length documentary: ‘Kell’s Ride for a Cure..’

You can find out more about Kell’s ride and about how to support his fundraising by visiting his Facebook pages: Kells Ride  and Kell’s Ride – Documentary, his Instagram account, his Apple Music account, and his Go Fund Me profiles Kell’s Ride for the Future and A Documentary about Dementia.

Alzheimer’s Research UK

A big thanks to Alzheimer’s Research UK for a £23,000 grant that will help us develop and disseminate our work and engage people around the country in research into rare dementias.