Join us on Friday 25 April 2025 to celebrate Undiagnosed Children’s Day!
Undiagnosed Children’s Day is our annual awareness day, where we spread the word about what it means to be affected by a syndrome without a name, also known as an undiagnosed genetic condition, raise awareness of SWAN UK and reach out to more families who need support.
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.
We are currently planning for Undiagnosed Children’s Day 2025 and will update this page with updates along the way. But rest assured we will have some epic resources and it will be a BIGGER, PINKER and IMPACTFUL day! And there will be a whole lot of ways to get involved.
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.
How can you help?
As we finalise plans, you can help by sharing our posts, getting in touch to share your story, help us raise funds to support the day and tell everyone you know about SWAN UK! Take a look below and see how you can support our mission.
Share your family story with us
Share your family story with us, a quote or photo of your child or family – this is an invaluable way for us to reach out to more families who need support and give professionals and the public more insight into what it means to live with an undiagnosed genetic condition.
Become a SWAN UK press volunteer
Being a SWAN UK press volunteer could involve you actively approaching your local or regional press such as newspaper or radio to see if they will do a feature on you for Undiagnosed Children’s Day or letting us get in touch with you about any press opportunities we have.
Please contact Miriam at [email protected] to find out more.
Raise vital funds for SWAN UK
It could be as simple as being sponsored to wear pink all week, hosting a pink tea party or setting yourself a challenge such as a run or cycle (in pink). Take on a solo challenge, or ask colleagues or your child’s school to take part!
Create an Undiagnosed Children’s Day JustGiving fundraising page or download our sponsorship sheets to get started.
Don’t forget to get in touch with our Fundraising team if you are raising funds in a public place or business (such as hosting a raffle or a bake sale) – we will send you a Letter of Authority to show you are authorised to raise funds for us.
Please contact Claire at [email protected] to find out more.
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
Take a look at our previous Undiagnosed Day campaigns
‘I wish I’d heard about SWAN UK sooner’
Families often tell us that they wish they’d heard about us sooner. Without a diagnosis families of children with undiagnosed genetic conditions can feel isolated and alone. For Undiagnosed Children’s Day 2024 we wanted to help more families find SWAN UK sooner.
Our community helped spread the word by sharing stories, videos, blogs and answered questions like ‘How old was your child when you found SWAN UK and where were you in your diagnosis journey when you found us?’.
It was a huge success and our campaign has continued throughout 2024