Gwasanaeth Gwybodaeth I Deuluoedd - Family Information Service

Soft Uk - Trisomy - Family support services

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.

SOFT UK aims to provide the most up-to-date, relevant information on Trisomy 13 (Patau’s syndrome) and Trisomy 18 (Edwards’ syndrome), 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 page.

Who do we support

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

We also offer the following types of support:

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

Is there a charge to use this service?


Can anyone use this service?

Anyone can contact us directly

Service details for this family support services

Language: English only

  • Able to support children with disabilities No
  • Are staff DBS checked? No

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