SWAN UK supports families affected by a syndrome without a name (SWAN) - a genetic condition so rare it often remains undiagnosed.
Each year thousands of children are born with a syndrome without a name, and without a diagnosis, families can be left with little to no support.
Our mission is to make sure that no family is left behind.
Before we found SWAN UK, my family and I felt isolated, we didn't fit in anywhere. Nobody seemed to be able to help us or understand what we were going through. Then we found SWAN UK, they have been like family ever since. I've made amazing friends, met some awesome and inspiring people, found the support and understanding we needed and finally found the place we fitted in.
We run fun events for the whole family, provide information through events and newsletters and have an extensive network of volunteer Parent Reps. We educate professionals about the issues faced by families affected by a syndrome without a name and seek to help improve services so that all families can access high-quality coordinated care and appropriate testing or treatment.
This Undiagnosed Children's Day, please support SWAN UK so we can continue our vital work. Donate today or organise your own activity - download our Fundraising Pack or take inspiration from the below for more ideas:
Host a pink afternoon tea, dye your hair, wear pink all day!
Walk, trike, push, run, cycle, swim your way to a virtual marathon! Or set a step challenge for every day in April.
Knit or crochet swans this Undiagnosed Children's Day - you could even make a postbox topper to raise awareness! Find inspiration here.
Host a bake sale or afternoon tea for friends, families, colleagues or at your school. No cash, no problem - simply create a QR card from your JustGiving page and scan to donate.
Host a jumble sale or sell your unwanted items online and donate the proceeds to SWAN UK.
Paint, draw or make a swan creation - sell individually or organise an auction of your work.
£30 pays for us to send resources out to be shared with families going through genetic testing.
£65 pays for an online disco for 40 of our families.
£100 would enable a SWAN UK parent rep to attend a healthcare conference, representing those affected by undiagnosed genetic conditions.
£500 would cover the cost of a party for 15 families, bringing them together and giving them a chance to meet face-to-face.
£1,000 would cover the cost of training and supporting a SWAN UK Parent Rep to educate local care professionals and services about undiagnosed genetic conditions.
£2,500 would cover the cost of a health and wellbeing workshop for SWAN UK parent carers.
£5,000 will allow us to run information events around the UK to help parents understand why genetic conditions can be so difficult to diagnose
Funds raised in aid of Undiagnosed Children's Day will support SWAN UK, the support network run by Genetic Alliance UK, the national charity of over 230 patient organisations, supporting all those affected by genetic, rare and undiagnosedd conditions.
* Charities pay a small fee for our service. Find out how much it is and what we do for it.
