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.
We know there are so many families out there who still need our support, which is why we are aiming to double our membership in 2017.
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 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.