Charity information


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, evidence-based information and non-judgemental support.

Founded 1995

  • Mission statement

    Our Mission is to provide support, assistance and information to families having a child affected with Patau’s syndrome (Trisomy 13) or Edwards syndrome (Trisomy 18) and their related disorders of partial Trisomy, Mosaicism and Deletions. We support families to make choices that are right for them and at all stages following a pre or post natal diagnosis

  • Aims

    SoFT UK aims to:

    • SOFT becomes the first point of contact for support for families affected by Trisomy 13 & 18. Directing families to the best information and support for them and their circumstance
    • Families feel supported and connected at whatever point in their Trisomy journey
    • SOFT creates a community of volunteers, who feel supported and empowered to deliver the objectives of SOFT
    • An increased awareness of Trisomy 13 & 18 within health professionals and the public
  • Overview

    Established: January 1995

    Registered Charity Number: 1002918

    Board members: 8

    Part time staff: 2

    Volunteers: 10

    Phone number: 03300881384

    Address: 48 Froggatts Ride B76 2TQ

    View charity accounts on the Charity Commission website