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. We received further funding from the Big Lottery Fund with a three year grant in 2016. Our activities are also supported by the House of Fraser Annual Charity Event, Thomas Cook Children’s Charity and Goodstuff.
It is estimated that around 6,000 disabled children are born every year with an undiagnosed genetic condition. Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. 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 by 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 support families in hospital and at home offering 24/7 access to support and information.
We run regular events to bring families together and provide opportunities to make precious memories.
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.