Rare Dementia Support

This fund raises money to support people with rare and devastating forms of dementia, and their families, friends and healthcare professionals.

The Rare Dementia Support service is organised by the Dementia Research Centre at The National Hospital, and runs specialist support group services for individuals living with, or affected by, a rare dementia diagnosis. There are five types of rare dementia supported by this service:

  • frontotemporal dementia (FTD)
  • posterior cortical atrophy (PCA)
  • primary progressive aphasia (PPA)
  • familial frontotemporal dementia (fFTD)
  • familial Alzheimer’s disease (fAD)

It costs over £100,000 a year to provide current levels of support for the five rare dementias – this includes meetings in London and other regions, support and admin staff and all other associated expenses. Over 3,000 people are currently on support group databases receiving emails and newsletters with around 1,000 attendees across all the meetings. In addition, travel and accommodation bursaries are available to help patients and carers attend the meetings.

The Rare Dementia Support Fund was created in 2016 by the merger of two existing ones: the FTD Support Group Fund and the Myrtle Ellis Fund. We want to raise over £150,000 a year to extend the service, with the ultimate aim that everyone affected by a form of rare dementia will have access to specialist information and support, as well as contact with other people with a similar condition.

For more information, download Rare Dementia Support or find our latest e-newsletter here.

To make a donation:

  • You can text RDSF84 to 70070 (don’t forget to include the amount you would like to donate in your text)
  • Set up a direct debit
  • Make a donation by cheque or bank transfer – call 020 3448 4724 for details
  • Go to Justgiving
  • You may also wish to consider leaving a gift in your Will – for further information, please see our legacy page.

If you would like to get involved with fundraising, download our new pack or contact us for advice and to discuss ideas. if you would like to receive our RDS e-letter which covers news, developments and supporter stories you can sign up here:


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