SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.
Thier 3 main Aims are to:
- 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.
They provide support by:
- Enabling families to make contact with others who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.
- Supporting families in hospital and at home offering 24/7 access to information and support.
- Running 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.
- Supporting siblings to make new friends who understand how difficult having an undiagnosed brother or sister can be.
- Educating 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.
