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SWAN UK (syndromes without a name)

Suitable for children and young people with SEND
Suitable for an individual with hearing impairment
Suitable for an individual with vision impairment

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.

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

As a member of SWAN UK you can:

  • 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 our online forums

  • Receive our monthly and quarterly newsletters


If you answer yes to any of the questions below 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?

For general enquiries email:

To join SWAN UK email:

Who to contact

Contact Name
Jane Curzon
Contact Position
Parent Rep for London
 020 7831 0883
Social Media

Where to go

Genetic Alliance UK, Level 3,
Barclay House, 37
Queen Square

Other Details


Age Ranges
Referral required
Last Updated 06/05/2021

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