Support & Information

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose.

Without a diagnosis it can be difficult to access basic information and support – if you can't find the answer to your question in the resources below please email us:

Ellie's story explains what it means to have an undiagnosed genetic condition and how SWAN UK helps. Click the link to find out more.


Don't forget to check out our news section and join our mailing list too.



Join our community of families

Join us