This is for Stanley- who is part of SWAN UK. Children who are living with a syndrome without a name.

Each year approximately 6,000 children are born in the UK with a syndrome without a name- a genetic condition so rare it is unlikely to be diagnosed. Without a diagnosis life can be very isolating for families, often they feel as if they don’t fit in and it can be very difficult to answer questions about their child.

SWAN UK supports families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed.  We are the only dedicated support network for these families in the UK and are run by the charity Genetic Alliance UK. 

Our aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. We work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis.

Our network brings families together in a supportive community who understand the unique challenges of life without a diagnosis. We run fun events for the whole family, provide information through events and newsletters and have an extensive network of volunteer Parent Reps. 

We educate professionals about the issues faced by families affected by a syndrome without a name and seek to help improve services so that all families can access high-quality coordinated care and appropriate testing or treatment.