SWAN is a term used to describe disabled children who are thought to have a genetic syndrome or condition that doctors have so far been unable to identify. It is not a condition, it is not a diagnosis and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.

Families often feel like they don’t ‘fit in’ and without a diagnosis it can be very difficult to answer questions about their child. SWAN UK is an initiative of the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. This support can help families with ‘Swans’ or ‘Swan children’ feel less isolated and give families a sense of belonging to a community.