swan uk logo header in pink

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

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Life for their families can be extremely isolating. Without a diagnosis families can struggle to access the right support and don’t know what the future holds for their child – will they walk?  Will they talk? What is their life expectancy? How will it affect future children?

SWAN UK enables families to:

  • Make contact with other families who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.
  • Attend free, fun whole-family events like our growing number of local stay and play sessions or regional day trips such as to theme parks like Peppa Pig World and Flamingo Land.
  • Access 24/7 information and support through our online forums.
  • Get opportunities to help raise awareness by speaking at events, sharing their story.
  • Develop personal and professional skills by volunteering as a SWAN UK Parent Rep.
  • We’ll also send children balloons when they are in hospital to cheer them up.

We are always keen to work with professionals and give talks to your team, exhibit or send out resources. We have recently updated our support and information leaflets which you can view online and download.

Sign up to our mailing list.


Email: joinus@undiagnosed.org.uk

Call: 020 7831 0883

For general queries email: info@undiagnosed.org.uk

Visit us at stand A17 to find out more about undiagnosed genetic conditions and SWAN UK

You can follow us on social media:







Comments are closed