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Swan UK - Family Support

SWAN UK supports families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed.  They are the only dedicated support network for these families in the UK and are run by the charity Genetic Alliance UK.

If you answer yes to any of the following questions, then they are here to help.

  • Have you been told your child has global development delay (GDD) or failure to thrive but not told the reason why? 
  • Is your child suspected to have a rare or genetic condition but more testing is needed to try and identify which one?
  • Does your child have unexplained medical, learning or physical disabilities?
  • Has genetic testing results come back negative or with a variant of unknown significance?
  • Did your child take part in the Deciphering Developmental Disorders (DDD) study or the 100,000 Genomes Project but you still don’t have a diagnosis?


This drop-in is held during our breakfast hub. Children’s play toys are available to keep the little ones entertained and you can enjoy breakfast and unlimited refreshments for £2nper person (under 5s eat free)