Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed.
Having an undiagnosed genetic condition means that children often go to hospital for lots of medical procedures and tests. They miss out on doing fun things other children their age get to do. Their siblings often have caring responsibility and can also miss out on their childhoods.

Undiagnosed children and their siblings have to cope with more than most on a regular basis. Their bravery makes them superheroes.

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