Will you help us ensure that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not?


We are the only dedicated support in the UK for families affected by a syndrome without a name – a genetic condition so rare it is often impossible to diagnose.

After two lonely years, we’re desperate to bring our members together again.

By fundraising for us you will be helping us to restart everything from our online discos and Singing Hands events, to face-to-face coffee meets, family events and day trips for those who feel ready to meet up in person.

We also want to restart our outreach programme so we can find all the families out there who need our help – we know there are currently thousands of them feeling isolated and alone, not knowing we exist.

Image shows a young man in a pink SWAN UK T-Shirt sat on a blanket with his mum
Image shows two women in pink SWAN UK T-shirts. They have just run a race and are wearing medals and smiling into the camera.


There are so many ways to get involved and anything you can raise, no matter how small, will make a massive difference.

You could:

  • host a pampering party and ask guests to make a small donation
  • have a bake sale
  • get sponsored to dye your hair or beard pink or only wear pink for a week 
  • draw some pink pictures and auction them for donations
  • share some of our posts on your social media with a donate button (see below)

Check out our fundraising pack for more ideas and however you decide to get involved, drop us a line so we can support you:

Online fundraising

It has never been easier to raise money online, all you need to do is add a donate button to your Facebook and or Instagram posts. 

Image shows instructions to add an instagram donation sticker to fundraise for SWAN UK
Image shows how to add a Facebook donate button to support SWAN UK