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Latest News & Events

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...

COVID 19 Update for Trisomy Families

10/04/2020
1 July 2020    Caring for vulnerable children   The Coronavirus outbreak has crea...
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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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