Each year approximately 6,000 children are born in the UK with a syndrome without a name- a genetic condition so rare it is unlikely to be diagnosed. Without a diagnosis life can be very isolating for families, often they feel as if they don’t fit in and it can be very difficult to answer questions about their child.

These children are some of the most isolated and medically vulnerable in the UK. They need our support now more than ever but like all charities, we are really worried about the impact of Covid-19 on our ability to support them.  We have had to cancel all our planned activities and while we are working on new ideas to support people who want to fundraise for us we are simply accessing people to share our Facebook appeal or the donation link on our website.


Challenge events

Set yourself a challenge that people can sponsor you to do. Get active and walk, run, swim, cycle, skydive to raise money for SWAN UK, there are events all over the UK throughout the year and to suit all abilities. We are happy to support you in whatever challenge you choose individually or get together as a group.

The best way to raise money is to set up a Just Giving page, that way people can easily donate to your event and find out what you are doing, just select SWAN UK as your chosen charity, donations come straight to us including any Gift Aid.

Alternatively download our sponsorship form here.

If you need any help finding a challenge to suit you then drop us an email:


Disclaimer – please read.

Organise your own fundraising

There are so many ways you can get involved in fundraising: coffee & cake sales, community quiz nights, host an event,  hold a local collection, get sponsored. Fundraising events, however big or small are a great way to get people involved, spread awareness of SWAN UK and raise money for a good cause.  Get your school, community group, local sports club or your workplace to join in too. We are open to any ideas and suggestions so get in touch: fundraising@undiagnosed.org.uk

Make sure you shout it out on social media: we are on Facebook Donate, a really easy way to get your online community of friends to support your cause. You can create a Facebook Fundraiser page (click ‘Fundraisers’ in the left menu of your News Feed and follow the instructions) and add a Donate button to your page that means people can easily donate directly to SWAN UK.

For more ideas download a SWAN UK fundraising pack here

Order a free SWAN UK collection tin here

Download our SWAN UK sponsorship from here

workplace fundraising

Corporate fundraising, get your employer involved

Get your employer or employees involved in fundraising. Take on a group challenge event like a half marathon, hike or an obstacle race and raise money that way. We have plenty of team activities we can help organise for you. There have been some fantastic fundraising efforts from companies getting together to do a challenge as a group, plus it’s a great team building activity. Ask about match funding, get your employer to match whatever you fundraise as team to top up your donation.

Or simply hold a cake sale, have a dress down Friday, silly hat day or have a collection box in the staff room to get people to donate their loose change.

Order a free SWAN UK collection tin here

Charity of the Year: many companies will nominate a charity of the year or make one-off donations throughout the year and businesses often chose a charity that has some personal significance to one of their employees. It would be great if you could nominate SWAN UK to your employer, we can help you with any application processes if necessary just email: fundraising@undiagnosed.org.uk

Sending your money to us

Please send your donations to us as soon as you have finished your fundraising, here’s how to get the money to us:

  • Donate via the website: using a credit or debit card donate
  • Cheques: please make payable to SWAN UK and send to Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, London, E17 6DS.  Please include a note to say how the money was raised with your contact details so we can send you a well deserved thank you letter !
  • Bank transfer: if you want to transfer your collected funds to us email fundraising@undiagnosed.org.uk and we will send you the details.
  • Cash: Please do not send cash as we are unable to accept cash donations.

Download our donation form here- don’t forget to tick the box for GiftAid

Where your money goes

Money raised for SWAN UK will be used to provide services for families affected by a syndrome without a name. These could include organising stay and play sessions or family events, developing information materials or putting on an information event. The money you donate could also help us to produce leaflets on subjects like genetics in education or social care rights. Here are some examples of how far your money can go towards supporting SWAN UK families.

  • £30 pays for a big bunch of balloons to be sent to a child having an extended stay in hospital.
  • £50 pays for a whole family to attend a big day out at a major attraction.
  • £1,000 covers the cost of training and supporting a SWAN UK Parent Rep to educate local care professionals and services about undiagnosed genetic conditions.
  • £2,500 allows us to run a day trip for 25 families to make precious memories.
  • £5,000 pays for an all-day information event about undiagnosed genetic conditions

Read our Family Stories here

Undiagnosed Children’s Day

The month of April is usually our biggest fundraising month culminating on Undiagnosed Children’s Day on the last Friday of the month – this year it will be on Friday 28 April 2023.

Keep an eye on this page and our social media to find out how you can get involved this year.