Frontotemporal dementia

7. Other useful organisations and information

Motor Neurone Disease Association

PO Box 246
Northampton NN1 2PR

01604 250505

National charity that funds and promotes research into motor neurone disease and provides support for people affected.

PSP Association

PSP House
167 Watling Street West
Northamptonshire NN12 6BX

0300 011 0122

Offers advice, support and information to people living with progressive supranuclear palsy and corticobasal degeneration. Also supports research into treatments and ultimately a cure for these conditions.

Rare Dementia Support

Box 16, National Hospital for Neurology and
Queen Square
London, WC1N 3BG

020 3448 4773

Runs specialist support group services for individuals living with, or affected by, one of five rare forms of dementia: frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, familial Alzheimer’s disease and familial frontotemporal dementia.

Further information

Last reviewed: April 2016
Next review due: April 2019

Reviewed by: Prof Jason Warren, Senior Clinical Fellow and Professor of Neurology and Jill Walton, Nurse Advisor, Rare Dementia Support, Dementia Research Centre, Institute of Neurology, University College London

This factsheet has also been reviewed by people affected by dementia. A list of sources is available on request.


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