SWAN UK (Syndromes Without A Name) is the only dedicated support network for families of children with undiagnosed genetic conditions in the UK. Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed.
This year we will be celebrating our fifth annual nationwide awareness day, Undiagnosed Children’s Day on Friday 27 April.
The aim of the day is to raise awareness of undiagnosed genetic conditions and to raise funds for SWAN UK. This year we are focussing on the impact that being undiagnosed has on the child and why this makes them superheroes!
Undiagnosed children and their siblings have to cope with more than most on a regular basis. Having an undiagnosed genetic condition means that children often go to hospital for lots of medical procedures and tests. They miss out on doing fun activities other children their age get to do. Their siblings often have care responsibilities and can also miss out on their childhoods.
Their bravery makes them superheroes. Help SWAN UK to support these superheroes so that they can enjoy their childhood.
With your help we will be able to continue to run free events for families affected by undiagnosed genetic conditions across the UK. These events bring families together and provide opportunities to make precious memories. They also give siblings the opportunity to make new friends who understand how difficult having an undiagnosed brother or sister can be. Help us continue to send balloons to children who have been in hospital and make the whole family smile.
There are lots of ways you can get involved in and leading up to the day:
FUN FUNDRAISING ACTIVITIES
Join our Undiagnosed Children’s Day online charity auction! We have over 60 auction lots for you to bid on, all starting at just £5. From family days out, to tickets to West End shows, there’s something for everyone with prizes across the country. New prizes will be added regularly so be sure to check back and share with your friends and family. Click here to have a look and start bidding! All lots have been generously donated by businesses so all of the money raised will go to support SWAN UK.
We are hosting our first ever virtual marathon from 22 April to 22 May. You have one month to walk, cycle or jog 26.2 miles, and you’ll collect a medal and a certificate to celebrate your achievement! It’s suitable for all ages and abilities and is just £8 to enter. Email: [email protected]or visit our special Undiagnosed Children’s Day website to download our virtual marathon pack.
Join us for a night of fun with our Undiagnosed Children’s Day National Quiz on 27 April in London, hosted by Genetic Alliance UK’s CEO Jayne Spink. This interactive entertainment quiz will see teams of up to six competing to take home a trophy. You will also be able to bid on our online auction and there will be a charity raffle with great prices. A table costs £30. To secure your space or to find out more email: [email protected].
SUPPORT US ONLINE
We’ve got a special website for Undiagnosed Children’s Day where you can find out more and get involved online by downloading and sharing our images: undiagnosedchildrensday.co.uk
Make sure you are following us on Instagram. Every day leading up to Undiagnosed Children’s Day we are posting SWAN UK children’s superhero images. We’d love for you to share your own superhero images and tag us in your posts.
Make sure you are following us and tweet including our twitter handle, SWAN_UK and use our hashtag: #UCDsuperhero
On Undiagnosed Children’s Day we will have Twitter Takeovers led by SWAN UK members from 8am to 11pm. Please join the conversation, retweet and help us trend on Twitter.