Genetics of dementia – useful resources
There are several organisations that can provide information on the genetics of dementia.
Association of British Insurers (ABI)
020 7600 3333
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
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
0300 124 0441
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
020 3325 0828
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.
Last reviewed: June 2021
Next review due: June 2024
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
To give feedback on this information, or for a list of sources, please email [email protected]
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