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

SWAN UK's aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. They work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis - bringing families together in a supportive community who understand the unique challenges of life without a diagnosis.