Getting Support

What support is available?

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. 

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. 

Alternatively all booklets are available here