SWAN UK (Syndromes Without A Name)

19/08/2026

'For us, the most challenging frustration of having a SWAN is not being heard, understood or recognised. Not being given the time to allow for full understanding of what you bring with your child, or recognition of that we have been through.'

Eti’s mum Hana shares her family’s story of how having a child with an undiagnosed genetic condition impacts their family. Read more on our website: https://geneticalliance.org.uk/news/etis-story/

13/08/2026

In this clip Frances Elmslie, Consultant Clinical Geneticist talks about the impact of that not having a diagnosis has for families and the importance of genetic testing. You can watch our full length videos for healthcare professionals here: https://youtu.be/5pQT_-bvXys?si=ZwBCMdFbxymgzSTb

30/07/2026

Genetic Alliance UK, the charity that runs SWAN UK and the Department of Health and Social Care - DHSC are hosting a webinar on Wednesday, 5 August 2026, 10:00–11:00, to share more about the Neighbourhood Health Framework and what it could mean for people with rare conditions.

The webinar is open to anyone with an interest in rare conditions policy including people with genetic, rare and undiagnosed conditions, carers, health professionals, researchers, and wider rare condition community stakeholders.

Register to learn more and share your thoughts on local care for people with rare conditions: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator&utm_id=97758_v0_s00_e0_tv2_a1demo0ebl8isp&fbclid=IwY2xjawTYEctwZG9mAWV4dG4DYWVtAjEwAGJyaWQRMTUzWnZvc2lSc3hzbEc0UWpzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeYYqb2hJkV1OlrPFGkOr-UfK1glJPoFhB3Uubp0vyVtkrOYYHZqmyh-VqJF4_aem_Ku6v6-HDz5biO3YM4TIxxg

⏰ One week to go!

Don't miss your chance to have your say on the future of local care for rare conditions, with the Neighbourhood Health Framework Webinar

🗓️ Wednesday 5 August 2026, 10:00 – 11:00
👉 Register to join the webinar: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

Join Genetic Alliance UK and the Department of Health and Social Care to find out how the Neighbourhood Health Framework will re-organise local health and care services in England over the next decade, and why it's so important that rare voices are part of shaping how it's delivered.

The DHSC Neighbourhood Health team will present and take live questions, with a focus on what this means for people living with rare conditions.

Open to anyone with an interest in rare conditions. Register today to secure your spot: https://www.eventbrite.co.uk/e/neighbourhood-health-framework-and-rare-conditions-tickets-1994651800229?aff=oddtdtcreator

09/07/2026

Have you read our practical information leaflet, created with Rareminds, for parents and carers who have a child with an undiagnosed genetic condition: https://geneticalliance.org.uk/support-and-information/swan-uk-syndromes-without-a-name/parenting-a-child-with-an-undiagnosed-genetic-condition-you-and-your-emotional-wellbeing/

25/06/2026

We are supporting ! Please share this post to help raise awareness about families affected by rare chromosome and gene disorders.

Unique - Rare Chromosome Disorder Support Group provides information, support and connections for families affected by rare chromosome and gene disorders, as well as the professionals who work with them.

If you or someone you know would like support, you can join their welcoming community for free. Visit their website: https://rarechromo.org/join-us/

18/06/2026

There can be a lot of uncertainty with undiagnosed
genetic conditions. This might be both in daily life, but also about the future. This can feel very difficult to get used to. Receiving a diagnosis may ease one lot of uncertainty, but often introduce others as a result. As time goes on, you might find that you become more used to living with uncertainty. The feelings
of worry, anxiety or frustration that go with it may
also become easier to manage too. Find out more about managing the uncertainty that comes from having a child affected by a syndrome without a name, and more, in our leaflet with Rareminds: 'Parenting a child with an undiagnosed genetic condition: you and your emotional wellbeing': https://geneticalliance.org.uk/support-and-information/swan-uk-syndromes-without-a-name/parenting-a-child-with-an-undiagnosed-genetic-condition-you-and-your-emotional-wellbeing/

17/06/2026

If you are the parent or carer of a child or young adult with a rare or undiagnosed condition you can have your say in this survey exploring and evaluating different ways of coordinating care for people affected by rare conditions. The deadline is 19 June 2026: https://ow.ly/AwJ250ZbO4v

The Concord2 survey deadline is Friday 19 June 2026, so have your say now before it closes!

Are you 18 or over, with a rare or undiagnosed condition? Or are you the parent or carer of a patient with a rare or undiagnosed condition? Have your say in this survey exploring and evaluating different ways of coordinating care for people affected by rare conditions.

The results of this survey can support improvements in how care is coordinated for people affected by rare conditions. The survey captures how the care of people affected by rare conditions is coordinated, and the costs and benefits of this to patients and families - it is run by CONCORD2 (COordiNated Care Of Rare Diseases 2) .

To complete the survey, click on one of the links below:

You are 18 or over and with a rare or undiagnosed condition 👉 https://ow.ly/u6OB50Z9OEj

If you are the parent or carer of a patient with a rare or undiagnosed condition 👉 https://ow.ly/HHIf50Z9OEl

Clicking through to these links, you will firstly be taken to the website with more information about the survey. If on reading this information you decide you do want to take part, you will then be directed to complete the survey online. It takes most people around 30 minutes to complete this survey.

You do not have to take part in the survey if you prefer not to; taking part in this survey is voluntary. You will not be asked to give your name or contact details, and we will not tell anyone that you have taken part in the survey. All information collected during the survey will be kept strictly confidential.

If you have any queries, contact the CONCORD2 Study Team at [email protected]

16/06/2026

SWAN stands for syndromes without a name. It is not a diagnosis in itself, but a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause. Visit our website to read about families' experiences: https://geneticalliance.org.uk/who-we-are/news-stories/?filter_site_wide_tag=38&filter_news_type&filter_location&filter_submit_btn=Apply

11/06/2026

Are you living with the uncertainty that comes with having a child who has a condition so rare it doesn't have 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