Category
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.
Its three stated aims:
DEVELOP
Develop and support a community of families of children affected by undiagnosed genetic conditions.
SUPPORT
Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.
RAISE
Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.