News & Events

6,000 children are born in the UK each year with a syndrome without a name

Last Reviewed 31/03/2016

By SWAN UK Digital Communications and Support Officer, Miriam Ingram

Undiagnosed Children’s Day is a nationwide event to increase awareness of children with undiagnosed genetic conditions, and raise funds for SWAN UK.

1 in 25 children is born with a genetic condition and currently 50% of children undergoing genetic testing through the NHS won’t get a diagnosis.

SWAN UK currently has around 2000 members with more making contact every day. However, we know that there are so many more out there who need our support and that is why we have a big aim.

Our aim is to double our membership by 2017.

It is thought that about half (50%) of children with learning disabilities[1] and in approximately 60% of children with multiple congenital problems[2] do not have a definitive diagnosis to explain the cause of their difficulties. Almost a third of babies born with a serious genetic condition die in childhood.

Another third live with chronic ill health or disability.

If you would like to find out more about SWAN UK or what it means to be undiagnosed please visit our website: and our blog where we have lots of family stories and information.

If you are the parent of a child with a syndrome without a name you can register by downloading and emailing or posting a registration form or emailing us at


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