SWAN UK- Genetic Alliance UK

SWAN UK- Genetic Alliance UK

Charity information

SWAN UK- Genetic Alliance UK

SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.

Founded 2011

  • Mission statement

    It is estimated that around 6,000 disabled children are born every year with an undiagnosed genetic condition.

    Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it.

    We want it recognised that being ‘undiagnosed’ is not always a temporary stage; the genetic cause of some conditions may never be known.

    We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support both in hospital and at home.

    We know there are so many families out there who still need our support, which is why we are aiming to double our membership

  • Aims

    SWAN UK- Genetic Alliance UK aims to:

    • To develop and support a community of families of children affected by undiagnosed genetic conditions.
    • To support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.
    • To raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.
  • Overview

    Established: May 2011

    Registered Charity Number: 1114195

    Board members: 10

    Full time staff: 9

    Part time staff: 6

    Volunteers: 100

    Phone number: 02078310883

    Address: SWAN UK- Genetic Alliance Level 3 Barclay House 37 Queen Square WC1N 3BH

    View charity accounts on the Charity Commission website
  • SWAN UK (syndromes without a name) 2016

    SWAN UK is the only dedicated support in the UK for families of children with undiagnosed ... More