Syndromes Without A Name (SWAN)
SWAN is a charity who helps raise awareness of children who suffer from undiagnosed disorders. They provide information and support and hold a database of people with similar symptoms so that they can find similarities. The service is for children aged between 0-19 years.
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 which are available to download. We offer 24/7 information and support through our online forums for registered members.
Who to contact
Last updated: 02/08/2021