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).
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 firstname.lastname@example.org
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