Rare Dementia Support

This fund raises money to support people with rare, early onset 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 six 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)
  • dementia with Lewy Bodies (DLB)

Over the past three years The National Brain Appeal has committed to raise £150,000 per annum to provide current levels of support for the six 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.

This year we are increading our fundraising target to £250,000 to develop and 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.

The Rare Dementia Support Fund was created in 2016 from the merger of the FTD Support Group Fund and the Myrtle Ellis Fund.

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

To make a donation:

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:

 

DONATE TO RARE DEMENTIA SUPPORT

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