We support UK based families of children and young adults affected by undiagnosed genetic conditions. 

If you answer yes to any of the following questions then we 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?


Occasionally we also support families with an ultra rare diagnosis if they cannot access support anywhere else.

If you would like more information about whether we can support you, please email info@undiagnosed.org.uk.

Images shows a man and two young boys on a trampoline at a SWAN UK event