Undiagnosed Children’s Day

Friday 26 April 2024

Join us on Friday 26 April 2024 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. 

Joining 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.

SWAN UK parent

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. This Undiagnosed Children’s Day we want to help more families find SWAN UK sooner.

Joining 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.

SWAN UK parent

How can you help?

This Undiagnosed Children’s Day we want to reach more families than ever before. From re-sharing our posts, to sharing your story, to raising funds and awareness for SWAN UK – we have got something for you!

Become a SWAN UK social media champion

Share and re-post our Undiagnosed Children’s Day posts on social media to help us reach more families sooner.

Create your own ‘I wish I’d heard about SWAN UK sooner’ story

We want to reach families earlier on in their journey. Can you help spread the word so that other families don’t feel so alone? Why not use your phone to record yourself answering these questions and share and tag SWAN UK as well as your other contacts on social media? (Film landscape for Twitter and Facebook and portrait for Instagram or Facebook stories)

  • How old was your child when you found SWAN UK and where were you in your diagnosis journey when you found us?
  • When did you realise that your child was undiagnosed?
  • What difference would it have made to you and your family if you’d found SWAN UK sooner?
  • How long was it until you got a diagnosis/ or how long have you been waiting and what impact has this had on your family?
  • What has SWAN UK meant to your family
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