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.

We have information leaflets below which are available to download. We are developing leaflets in further languages and these will also be available to download once they are completed.

If you can't find the answer to your question in the resources below or would like to make an enquiry please email:

Our animation called ‘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:

We offer 24/7 information and support through our online forums for registered members. If you would like to become a SWAN UK member please email: or click here 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