Undiagnosed Children’s Day is a nationwide event to raise awareness of children with undiagnosed genetic conditions, also known as syndromes without a name. SWAN UK supports families in hospital and at home offering 24/7 access to support and information and runs free family events to bring families together.
Many thousands of families affected by undiagnosed genetic conditions are not accessing support.
Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Life for the families of these children is isolating, they often think they are the only family in this situation and don’t know that support is available. We want to change this.
This year we’re asking everyone to become detectives and help us find families who need our support.