Genetics of dementia

9. Other useful organisations

Genetic Alliance UK

4D Leroy House

436 Essex Road

London N1 3QP

T 020 7704 3141



A national charity working to improve the lives of patients and families affected by all types of genetic conditions. Includes information about NHS genetics centres and insurance.

Huntington's Disease Association

Suite 24, Liverpool Science Park IC1

131 Mount Pleasant

Liverpool L3 5TF

T 0151 331 5444 (advice line, 9am-5pm, Monday to Friday)



Supports people affected by Huntington's disease and provides information and advice to professionals who are supporting affected families.

Rare Dementia Support

Dementia Research Centre

First floor, 8-11 Queen Square

London WC1N 3AR

T 07592 540555


Support groups that provide information and support to people with rare forms of dementia, their families, friends and healthcare professionals. Covers rare dementia diagnoses such as frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, familial Alzheimer's disease and familial frontotemporal dementia (fFTD).

More information

Last reviewed: May 2016

Next review due: May 2019

Reviewed by: Dr Rita Louro Guerreiro, Department of Molecular Neuroscience, Institute of Neurology, London and Dr Nayana Lahiri, Clinical Geneticist, South West Thames Regional Genetic Services, St George's University Hospitals NHS Foundation Trust, London

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

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