SWAN UK supports families affected by a syndrome without a name - a genetic condition so rare it often remains undiagnosed. They are the only dedicated support network for these families in the UK.

https://www.undiagnosed.org.uk/support-information/what-does-swan-or-being-undiagnosed-mean/

https://www.undiagnosed.org.uk/swanuk-news/news_category/family-story/