SWAN UK supports families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed.
We work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis.
We are the only dedicated support network for these families in the UK and are run by the charity Genetic Alliance UK.
Our aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not.
We run fun events for the whole family, provide information through events and newsletters and have an extensive network of volunteer parent reps.