SWAN UK launches new videos on Undiagnosed Children’s Day – Friday 24 April 2026
Share our videos this Undiagnosed Children’s Day
Parents of children with undiagnosed genetic conditions often see so many different healthcare professionals. It takes an average wait of 5.6 years for a rare diagnosis in the UK – through 8 clinicians and 3 misdiagnoses. We have created 3 videos for healthcare professionals so that they have a greater understanding of what it means to have a child with an undiagnosed genetic condition and the challenges that families face. We will launch these on our YouTube channel, this page and our social media channels on Friday 24 April 2026.
For more ways to get involved in Undiagnosed Children’s Day click here.
Laura's son Charlie has an undiagnosed genetic condition also known as a syndrome without a name. In this video she talks about the impact of having a child with an undiagnosed genetic condition.
In this video Roald Dahl SWAN (Syndromes Without a Name) Clinical Nurse Specialist at Great Ormond Street Hospital, Anna Jewitt shares her experiences of supporting families whose children have undiagnosed genetic conditions and how she thinks healthcare professionals can best support them.
This film features Frances Elmslie, Consultant Clinical Geneticist & Care Group Lead at St George’s University Hospitals NHS Foundation Trust and Clinical Director – South East Genomic Medicine Service Alliance.
Frances explains what undiagnosed genetic conditions are, the importance of getting a genetic diagnosis and the impact on families:
'A genetic diagnosis is important because it may give an idea of prognosis and whether other health needs may arise. It can occasionally allow access to targeted therapies and clinical trials. A diagnosis also enables parents to identify other families with similarly affected family members, and empowers them to seek medical, social and educational support.'