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Latest News & Events

The Prudential Ride London

05/08/2020
UK Charities need your help! The Covid-19 pandemic has had a catastrophic effect on the UK’s ...

The CoIN Study

28/07/2020
Are you the parent of a child aged 0-16 with a rare genetic and/or neurodevelopmental disorder? Can...

Jeans for Genes 14 to 20 September 2020

14/07/2020
We are delighted to be involved in the UK Genetic Disorders Partnership Network again in 2020. Jean...
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About Soft UK

SOFT UK was founded in 1990 by two mothers, Christine Rose and Jenny Robbins. They had discovered first-hand that there was a lack of support and information for families affected by Trisomy 13 (Patau’s syndrome), Trisomy 18 (Edwards’ syndrome) and related disorders.

Remaining true to its founding purpose, SOFT UK is an organisation run by families for other families. We provide up-to-date information and non-judgemental support. 

Our information is evidence-based and prepared in collaboration with our professional advisers. It is always given to complement the advice of the clinicians who work with individual families.

We do not offer medical advice and at all times we respect the relationship between families and their medical professionals.

SOFT UK is a registered charity no. 1002918 (England and Wales) | no. SC043341 (Scotland).


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