Skip to main content

SWAN (syndromes without a name)

Level 3, Barclay House,
37 Queen Square,
Telephone: 020 7831 0883


Who we are:

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.

SWAN is run by the charity Genetic Alliance UK.

It is free for any family in the UK with a child (0-25) affected by an undiagnosed genetic condition to join SWAN.

Is it common to have a syndrome without a name?

It is thought that about half (50%) of children with learning disabilities and approximately 60% of children with disabilities which are apparent from birth do not have a definitive diagnosis to explain the cause of their difficulties.

  • Approximately 6,000 children are born in the UK each year with a genetic condition likely to remain undiagnosed.
  • Currently around 50% of children undergoing genetic testing in the UK won’t get a confirmed diagnosis.

The three main reasons why a child’s genetic condition remains undiagnosed:

  • It is very rare or a condition that hasn’t been seen before so there is no test
  • It is an unusual presentation of a known condition and a child’s symptoms might be different to those with the same condition so not tested for because it is not recognised as that condition.
  • Some genetic testing finds genetic changes of ‘unknown clinical significance’

What we do:

SWAN UK membership offers:

  • A mechanism 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
  • Access 24/7 information and support through online forums
  • Monthly and quarterly newsletters

If you answer yes to any of the following questions then SWAN UK is here to support your family:

  • Have you been told your child has global development delay or failure to thrive, but not been told the reason why?
  • Does your child have medical, physical or learning difficulties which are currently unexplained?
  • Is your child suspected to have a genetic condition but the doctors don’t know what it is?
  • Has your child had genetic tests, for example microarrays, that have come back negative or or of ‘unknown clinical significance’?
  • Is your child taking part in, or are you hoping they will take part in, genetic research such as Deciphering Developmental Disorders (DDD) or the 100,000 Genomes Project?
  • Is your child having their exome or genome sequenced, or have they had exome or genome sequencing and the cause of their condition is still unknown?

Find out more:

Record Last Updated on: 04/04/2018

Your Feedback | The Likes & Dislikes from real parents

Sign in to add feedback

Disclaimer-important information about the Hackney Local Offer

Hackney's Local Offer website is a free and impartial service provided by the London Borough of Hackney in partnership with the NHS, local education, health and community services. The information contained within the website is available for the purposes of identifying services and provision that may be available to children and young people with special educational needs and/or disabilities.

This information does not represent a recommendation or an endorsement of a Service or Provider and neither does the London Borough of Hackney or its partners make any representations or warranties as to the accuracy of the information. Anyone seeking to use or access a service or provision is responsible for undertaking their own checks to determine the suitability and fitness for purpose of that service and provision. In no event will we be liable for any loss or damage including, without limitation, indirect or consequential loss or damage, or any loss or damages whatsoever arising from use or loss of use of data or profits arising out of or in connection with the use of the Hackney Local Offer.

Some providers will be registered and inspected by external agencies, such as Ofsted or the Care Quality Commission. Anyone working with children and young people will be required to have appropriate Disclosure and Barring Service Check (the replacement for the Criminal Record Check), safeguarding policies and insurance in place, which they should make available to you on request.

Help & Advice

Back to top