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SOFT UK Support


Before SOFT UK was set-up in 1991, most families didn't know where to turn when they received a diagnosis of Trisomy 13 or Trisomy 18. Their experience of Trisomy was hugely isolating and they felt completely alone. Our primary mission at SOFT UK is to ensure families can now access support when they need it. 

SOFT UK Support Volunteers are parents with experience of receiving a diagnosis of Trisomy 13, 18 or a related condition.  They are specially trained to provide information and support to new members. 

We also run our SOFT FAMILIES Facebook group enabling SOFT UK members to connect with each other online. 



How We Can Support You

SOFT UK Support Volunteers are people with personal experience of Trisomy 13, Trisomy 18 or related conditions. They have all completed our bespoke SOFT UK training programme to enable them to provide peer support to other parents and are mentored on an ongoing basis.  Support is provided primarily by email, however telephone support is available if required. 


We provide support to families:

  • Through prenatal diagnosis 
  • During pregnancy
  • When a pregnancy ends in any circumstances
  • For families caring for a baby, child or adult with T18 or T13
  • Through loss, bereavement and grief
  • To families experiencing anxiety about future pregnancies


Our Support Volunteers can offer the following types of support:

  • listening, empathy and understanding
  • non-directive support
  • signposting to information and services




How to Contact Us


SOFT UK Publications


SOFT UK produces a range of publications for families affected by trisomy 13 (Patau's syndrome), trisomy 18 (Edwards' syndrome) and related conditions.

  • Your Unborn Baby was written to support families through a prenatal diagnosis.  
  • Your Baby gives information to families with a baby.
  • Trisomy 13/18 for Siblings gives information to children in an age-appropriate way and can be used as the basis for family conversations.
  • SOFT UK newsletters contain a range of information and many family accounts of their Trisomy experiences.

If you would like a printed booklet, or any further information, please contact us.

Your Unborn Baby Booklet

Your Unborn Baby was written by SOFT UK to provide a basis for discussions between you and your medical advisers. It explores the issues confronting parents after a prenatal diagnosis of trisomy 13 (Patau's syndrome) or trisomy 18 (Edwards' syndrome). 

You won't find any recommendations for particular methods of treatment as these should always be done in consultation with your doctor and other clinicians. But you will find plenty of information to help you towards making informed choices for you and your family.

You can download a copy of the complete booklet. Contact SOFT if there is anything you would like to talk about.

Your Baby Booklet

Every family is unique. What may be right for one child or family may not be right for another and parents can use these shared memories as a basis for discussion between themselves and their medical advisers. 

SOFT does not recommend particular methods of treatment, and new treatments must never be started or existing treatment changed without consulting your doctors. SOFT does not represent any political or religious groups.

You can download a copy of the complete booklet. Contact SOFT if there is anything you would like to talk about.

Sibling Support Booklet

A resource created specially by SOFT UK to support brothers and sisters through the experience of having a sibling with a Trisomy.

Funded by Jeans for Genes. 


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