SOFT UK - Support Organisation for Trisomy 13/18
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.
How We Can Support You
The SOFT UK family support team can be contacted:
All members of the SOFT UK family support team are volunteers with personal experience of Trisomy 13, Trisomy 18 or related conditions. They have all completed a bereavement training course and have ongoing supervision.
We provide support to families:
- Through prenatal diagnosis
- During pregnancy
- When a pregnancy ends
- 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