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.
We were established in 2011 thanks to a five-year grant from the Big Lottery Fund and received further funding with a three-year grant in 2016.
It is estimated that around 6,000 children are born every year with a syndrome without a name. Our Big Ambition is that every family affected by a syndrome without a name has the support they need, when they need it, regardless of whether they have a diagnosis or not.
We want it recognised that being undiagnosed is not always a temporary stage; the genetic cause of some conditions may never be known.
We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support, both in hospital and at home.