Gene People

Gene People has a genetic counsellor-led helpline and a partnership network of condition-specific support groups.

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Charities and not-for-profit

This category includes charities, not-for-profit organisations and patient advocacy groups. These groups play a crucial role in supporting people living with a rare disease and their families, driving and funding research, building communities and networks, raising awareness and giving a voice to people living with a rare disease. Raremap does not aim to list every patient organisation in the UK, but it includes umbrella bodies, representative organisations, disease-agnostic support/funding organisations, and smaller organisations that have self-registered.

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Raremap

LifeArc is a charity registered with the Charity Commission for England and Wales no. 1015243 and a charity registered in Scotland with the Office of the Scottish Charity Regulator no. SC037861.   

LifeArc is a company limited by guarantee no. 2698321 incorporated in England and Wales.  
© LifeArc 2026

Registered office: 

Lynton House, 7-12 Tavistock Square, London, WC1H 9LT

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