We have 3 aims


Develop and support a community of families of children affected by undiagnosed genetic conditions.


Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.


Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.

We provide support

We enable families to make contact with others who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.

We support families in hospital and at home offering 24/7 access to information and support.

We run regular free events to bring families together and provide opportunities to make precious memories. These include stay and play sessions, coffee meet ups and regional day trips to theme parks such as Peppa Pig World and Flamingo Land.

We support siblings to make new friends who understand how difficult having an undiagnosed brother or sister can be.

We educate professionals about the issues faced by families affected by a syndrome without a name and help improve services so that all families receive high-quality coordinated care and appropriate testing/treatment.

Our corporate supporters

If you are interested in becoming one of our supporters please email [email protected].

Our Team

The SWAN UK team is a mix of paid employees and volunteers offering support and information to families and professionals across the UK.

Our work is also supported by the wider Genetic Alliance UK team and you can find out more about them here.

Join our Community Of Families