SWAN UK (Syndromes Without A Name)

19/05/2026

If you missed Roald Dahl SWAN nurses Anna and Lucy along with Ali Drumgoon, mum to Roscoe, on Women's Hour you can catch up here at 28 minutes, 20 seconds! If you have a child with an undiagnosed genetic condition you can connect with other families by joining the SWAN UK community here: https://docs.google.com/forms/d/e/1FAIpQLSeTIpjGgX4YuwsVqvbCeYgCRLCbMTjtPXsNBKRGsCOnh8fjNA/viewform
Roald Dahl's Marvellous Children's Charity Great Ormond Street Hospital and Charity

This morning, Roald Dahl SWAN (Syndromes Without A Name) Nurse Specialists Anna and Lucy, together with parent Tali, were delighted to join Anita Rani on BBC Radio 4's Woman’s Hour to raise awareness of Children with Medical Complexity (CMC) and Syndromes Without a Name (SWAN).

They also discussed the vital difference Roald Dahl Nurses make to the NHS and to the families they support.

https://www.bbc.co.uk/sounds/play/m002vmkd

06/05/2026

What can healthcare professionals do to support families who have a child with an undiagnosed genetic condition?

27/04/2026

What are genes?

Dr Frances Elmslie Consultant Clinical Geneticist & Care Group Lead at St George’s University Hospitals NHS Foundation Trust, explains.

25/04/2026

A big shout out to Freya who is doing a sponsored 6Km wheel at her local park today to raise funds for SWAN UK and awareness for undiagnosed children everywhere. Click here to read Freya's story: https://ow.ly/RFpE50YP3CL

24/04/2026

What are undiagnosed genetic conditions, why is diagnosis important and what impact does being undiagnosed have on families?

Dr Frances Elmslie, Consultant Clinical Geneticist & Care Group Lead at St George’s University Hospitals NHS Foundation Trust St George's, Epsom and St Helier Hospitals Group
and Clinical Director – South East Genomic Medicine Service Alliance features in this film for healthcare professionals.

She explains: '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.'

Please watch and share.

24/04/2026

In our second film for healthcare professionals, Roald Dahl SWAN (Syndromes Without a Name) Clinical Nurse Specialist at Great Ormond Street Hospital and Charity, Anna Jewitt shares her experiences of working with families whose children have undiagnosed genetic conditions and how she thinks healthcare professionals can best support them. Please watch and share.

24/04/2026

Happy Undiagnosed Children’s Day! We are excited to launch our first new film for healthcare professionals!

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. Please watch and share.

23/04/2026

'Test after test, appointments by the truckload, too many hospital visits to count, multiple surgeries. We felt like we were no longer alone in our frustrations, experiences, thoughts, worries and anger. SWAN UK has shown us that there are other incredible children like Eti.'

Read more here:

Eti’s mum Hana shares her family’s story of how having a child with an undiagnosed genetic condition impacts their family

17/04/2026

If your child has an undiagnosed genetic condition, how many different healthcare professionals do they see as part of their care?

Please watch and share our films for healthcare professionals that will be launched on Undiagnosed Children's Day, Friday 24 April 2026.

Find out more including how to share your story here: https://ow.ly/CYzj50YKF6e

16/04/2026

If you have a child with an undiagnosed genetic condition you can complete the Future for Rare Survey: https://www.smartsurvey.co.uk/t/future-for-rare/
More information here: https://geneticalliance.org.uk/future-for-rare/?fbclid=IwY2xjawROL19leHRuA2FlbQIxMABicmlkETFmbGlKV1RIallUbjl1ZG5Ec3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHszAIBVcQnH-UbcQtb0dEVAUIUmbANkOPGBophngCytW3yHUiUodWI2eoITp_aem_LonGCpubZJEq07kM6McugA

The UK Rare Disease Framework has been extended to January 2027, creating an important window to help shape what comes next. As members of Genetic Alliance UK and supporters of the Future for Rare campaign, we want to make sure you have the opportunity to share your experiences.

The Future for Rare survey is designed to capture a comprehensive picture of the current experiences and priorities of the genetic, rare and undiagnosed community across the UK.

We welcome views from everyone, whether you are living with a genetic, rare and undiagnosed condition, caring for a loved one, are working for a support organisation, as a researcher or a healthcare professional. Every perspective is valued equally and will directly inform recommendations to all four governments.

👉 Take part: https://buff.ly/O3yk0WF (closes 24 April)
👉 Learn more: https://buff.ly/Zk4Jir0