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:
It costs over £100,000 a year to provide current levels of support for the five rare dementias – this includes 13 London and 50 regional meetings a year, a part-time support nurse co-ordinator and all other associated expenses. Over 2,500 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 to have access to specialist information and support, as well as contact with other people with a similar condition.
To make a donation:
You may also wish to consider leaving a gift in your Will – for further information, please see our legacy leaflet