7. Other useful organisations and information
Motor Neurone Disease Association
PO Box 246
Northampton NN1 2PR
National charity that funds and promotes research into motor neurone disease and provides support for people affected.
167 Watling Street West
Northamptonshire NN12 6BX
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
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.
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.
View a PDF of 'Frontotemporal dementia':