We understand a diagnosis of Trisomy 13 or Trisomy 18 can feel isolating. Our primary mission at SOFT UK is to ensure families can access support when they need it.

The SOFT UK support line provides a safe, confidential place for anyone whose pregnancy or child is affected by Edwards’ syndrome (also called Trisomy 18) or Patau’s syndrome (also called Trisomy 13). Whether your experience is recent or happened long ago, we aim to support you for as long as you need us.

0300 102 7638

The support line is free or low cost to call (depending on your telephone provider).

The support team can also be contacted on:

support@soft.org.uk

Parents who have a prenatal higher chance result or diagnosis of Edwards’ syndrome or Patau’s syndrome.

Parents who are caring for a child with Edwards’ syndrome or Patau’s syndrome.

Bereaved parents.

Parents who have / are planning to end a pregnancy.

Other family members.

Friends and colleagues.

Healthcare professionals.

Other professionals supporting families.

We have a small team of dedicated and trained Peer Support Volunteers to offer confidential, non-judgemental and compassionate support. They are all parents themselves who have had a similar experience to you.

The SOFT UK Support Line offers support across the UK (England, Wales, Scotland and Northern Ireland) in the following ways:

Information about Edwards’ and Patau’s syndrome.

Caring for an older child affected by Edwards’ or Patau’s syndrome.

Bereavement support (coping with grief, anger, hopelessness, guilt, anxiety, facing the future).

Practical information relating to decisions required during and after pregnancy. Our information is based on the ‘lived experience’ of other parents.

Signposting to other services and sources of support that may be helpful.

Coping with another pregnancy after the death of a baby.

SOFT UK does not offer medical advice.

The team are available to speak on the telephone or respond to emails from Monday to Friday (not bank holidays). Your call will initially be responded to by an answer phone where callers can describe the support they need and leave their contact details. We aim to return your call within 24 hours during opening hours. Or you can email us at support@soft.org.uk if you prefer. We aim to respond to emails within 24 hours during opening hours.

Calls and emails are confidential. We will not share information outside of SOFT UK, except if there is an immediate risk of harm to you or someone else.

SOFT FAMILIES Facebook group enables SOFT UK members to connect with each other online.

We also have a number of other Facebook groups that are focused on a smaller area of your Trisomy journey. They are:

SOFT UK - Your Trisomy 13/18 Journey

SOFT UK - Support For Families Ending a Pregnancy

SOFT UK - Grandparents

SOFT UK – Bereaved Parents Support Group

SOFT UK - Support For Dads

SOFT UK also run free Family Days across the UK and have recently started to offer smaller regional events to improve accessibility. All SOFT UK’s services and events are provided free of charge to families.

SOFT UK also offer the chance to add a star in remembrance of your child on our remembrance wall. To add your star, please email contact@soft.org.uk.

SOFT UK hosts a forum for members to discuss anything related to Trisomy 13 and Trisomy 18. The forum is a safe place for you to share your experience and ask questions.

Healthcare professionals are also welcome to join and take part in our dedicated professionals area.

SOFT UK Forum