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.
How can you help?
Please join us to celebrate undiagnosed families and help us to raise awareness of SWAN UK and what it means to have a child affected by a syndrome without a name.
Share your experiences
We what to know what SWAN UK means to you and/or about what it means to have a child with an undiagnosed genetic condition. You can email us letting us know so we can share on our social media.
If you’d prefer to write a blog for our website, then please get in touch and we can share some guidance and some prompt questions to get your started
Fundraise
If you feel like we have provided support to you and your family please consider taking part in a fundraiser to raise money for SWAN UK or making a donation to support our work. Some ideas include:
Setting up a Facebook Fundraiser. After starting to write a post, click the 3 dots and then ‘raise money’. Type in ‘SWAN UK’ and ‘Genetic Alliance UK’ will come up with the SWAN UK logo. All money raised will go to ‘SWAN UK’ which is run by the charity Genetic Alliance UK’.
Please contact Miriam at [email protected] to find out more.
Looking to set up your own fundraiser? This could involve a school non-uniform day, a pink bake sale or taking on a challenge such as a run. You can find some up and coming events and challenges here.
By setting up regular donation you will help provide lasting change to the undiagnosed community. You can also support us with a one off donation through our Undiagnosed Children’s Day JustGiving page.
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
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