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What we do

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 information and support for families affected by Trisomy 13 (Patau’s syndrome), Trisomy 18 (Edwards’ syndrome) and related disorders.  Remaining true to its founding purpose, it is an organisation run by families for families.

SOFT UK aims to provide the most up-to-date, relevant information on Trisomy 13 and Trisomy 18, in a way that is accessible both for families and for professionals working with them.  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.

SOFT UK supports families at every stage of their journey; through pregnancy, when caring, after a loss, expecting a new baby and beyond.  There are a range of ways to access our support; through our publications, our befriending service, our social media pages or our Family Events. We also signpost to other partner organisations for more specific information or supports.

SOFT UK is also committed to raising awareness about Trisomy conditions in our communities.  We work in a range of multi-agency partnerships to raise the profile of Trisomy conditions, increase awareness of SOFT UK and its work and to provide training for professionals.  We hope that by raising awareness, we will improve the experiences of families affected by Trisomy.

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

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.