About us

What we do:

Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses: frontotemporal dementia (FTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), familial Alzheimer’s disease (FAD) & familial frontotemporal dementia (fFTD).

We provide regular support group meetings, newsletters, telephone contact networks, websites and access to information and advice for people affected by these five rare dementia conditions.

Our vision is for all individuals with or at risk of one of these rarer forms of dementia to have access to specialist information, support and contact with others affected by similar conditions.

Rare Dementia Support liaise with other affiliated organisations including the Dementia Research Centre and UCL Institute of Neurology to facilitate support group meetings in other parts of the country and are keen to extend the reach and remit of the support network through meetings and individual regional contact facilitators.

 

To find out more about the support we provide, take a look at the information about one of our groups:

 

Meet the Team:

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