On Friday 24 April 2026 we are celebrating Undiagnosed Children’s Day!
Undiagnosed Children’s Day is an annual awareness day on the last Friday in April to celebrate and raise awareness of undiagnosed genetic conditions and SWAN UK. It is also the chance to raise funds for SWAN UK.
SWAN UK parentJoining SWAN UK has made me realise we are not alone in the journey, and that there are so many families just like ours. It has given us a safe place to talk about the problems we are facing, and other families are able to give us a few words of support or wisdom.
What is SWAN UK?
SWAN UK (syndromes without a name) is the only dedicated support community for
families of children with undiagnosed genetic conditions in the UK. We are run by the charity Genetic Alliance UK and SWAN UK is free to join by completing a short registration form.
What are syndromes without a name/undiagnosed genetic conditions?
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. Children affected by a syndrome without a name can have a range of different symptoms and each child is likely to be affected differently. However, many SWAN children are described as having global developmental delay, learning and/or physical disabilities or complex medical needs. Watch our animations to find out more about genetic conditions, how genetic conditions are diagnosed and why some genetic conditions remain undiagnosed.
How you can help support Undiagnosed Children’s Day 2026
Share our new videos for healthcare professionals
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 during the week of 21 April. If you are a healthcare professional or would like to share them in advance with healthcare professionals that you see please get in touch and we can send you embargoed copies: [email protected].
Share your story
By sharing your own experiences you can help to:
-Reach out to others who may be feeling isolated and alone and need support.
– Create greater understanding around what it’s like to have a child with an undiagnosed genetic condition
– Increase awareness among healthcare professionals
– Engage with policy makers
Write a blog post
You can have a look at our guidelines here or email [email protected] to find out more.
Share your story on social media
- Tag us in your Undiagnosed Children’s Day posts and share ours:
Facebook: @SWANchildrenuk
Instagram: @swanchildrenuk
LinkedIn: genetic-alliance-uk
- Write a post about your child, the impact that having an undiagnosed genetic condition has on your family, what you wish people understood or why supporting children and their families with undiagnosed genetic conditions is important to you. Adding a photo or graphic adds impact.
- Download our graphics
Get your child’s school involved
- Offer to give a short talk to the class or assembly about undiagnosed genetic conditions and share your story
Raise awareness at work or play
Your work, a book club, or sports team are great places to reach new people.
- Run an event: host an afternoon tea, a cake sale or dress up day/casual clothes day/ wear pink
- Send an email: ask permission to send a short email to your colleagues or club members explaining what Undiagnosed Children’s Day is and why it matters to you.
- Put up a flyer: download it here or email us if you’d like us to post you some: [email protected].
Share your story with your local or regional media
Local media (newspapers, radio, community websites) are always looking for local stories that impact communities.
- Share a short summary of your story and a few lines about Undiagnosed Children’s Day and SWAN UK. Click here for some key points. We can help support you with this so get in touch: [email protected].
- If you’ve shared your story before why not give an update.
Download our images to share
SWAN UK parentJoining SWAN UK right at the beginning of our journey was an absolute lifeline as we waded through the relentless waves of we don't know. Nobody here ever judged my feelings, but simply acted quite literally my port in the storm with a shared understanding of not knowing. I've made friends both local and many miles away who I know I will remain friends for life.
Download our SWAN UK fundraising resources
From SWAN UK bunting and cupcake flag toppers, to sponsorship forms and our #MySWAN craft activity, we have lots of downloadable resources to make your Undiagnosed Children's Day fundraising event even more fantastic!
Support us
Donate to ensure we can reach more families affected by a syndrome without a name