Genetics of dementia – useful resources

There are several organisations that can provide information on the genetics of dementia.

Genetics of dementia
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Useful organisations

Association of British Insurers (ABI)

Telephone
020 7600 3333 

Email
[email protected] 

Website
www.abi.org.uk
www.abi.org.uk/data-and-resources/tools-and-resources/genetics/

The Association of British Insurers (ABI) is a trade association made up of UK insurance companies. Members of the ABI have agreed to a ban on the use of predictive genetic test results in insurance cover.

CADASIL Support UK

Email
[email protected]

Website
www.cadasilsupportuk.co.uk

CADASIL Support UK is a patient support group. It allows people affected by this rare condition to help each other and share their experiences, mostly on social media forums.

Genetic Alliance UK

Telephone
0300 124 0441

Email
[email protected]

Website
www.geneticalliance.org.uk

Genetic Alliance UK is a national charity that works to improve the lives of patients and families affected by all types of genetic conditions. It provides information about NHS genetics centres and insurance.

Rare Dementia Support

Telephone
020 3325 0828

Email
[email protected]

Website
www.raredementiasupport.org

Rare Dementia Support provides information and support to people with rare forms of dementia, their families, friends and healthcare professionals. It has support groups that cover rare dementia diagnoses such as frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, familial Alzheimer’s disease and familial frontotemporal dementia.

Review details

Our information is based on evidence and need, and is regularly updated using quality-controlled processes. It is reviewed by experts in health and social care and people affected by dementia.

Reviewed by: Dr Nick Bass, Associate Professor, UCL Division of Psychiatry

This factsheet has also been reviewed by people affected by dementia.

To give feedback on this factsheet, or for a list of sources, please email [email protected]

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