Get Involved

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.

SWAN UK received a three-year grant from the Big Lottery Fund in 2016 but we still need your help to achieve this ambition.

There is no science to fundraising – anyone can do it and there are endless ways of raising money. Why not drop us a line and we can have a chat about your ideas or suggest some ideas:

You can set up your own fundraising page, with the money you raise going straight to SWAN UK through Just Giving or Virgin Money Giving or you can use our sponsor form. If you are a UK taxpayer don’t forget to tick Gift Aid, as this will mean we get an extra 25p for every £1 raised.  

If you would like to make a one off donation you can also do this via Just Giving or Virgin Money Giving or text SWAN11 plus the amount (up to £10) to 70070.

Thank you so much for your support!

Undiagnosed Children's Day

Undiagnosed Children's Day

Undiagnosed Children’s Day is a nationwide event that happens on the last Friday of every April. It is a day where we increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK (syndromes without a name), the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

Last year Undiagnosed Children’s Day took place on 29 April. Fundraisers, schools, families, companies and donations raised an amazing grand total of £20,700! With your help next year we can raise even more.

With your help we can keep providing our unique and vital service to families of children with undiagnosed genetic conditions across the UK. It will also help us to realise our Big Ambition – that all families affected by a syndrome without a name get the support they need, when they need it.

SWAN UK received a three-year grant from the Big Lottery Fund in 2016 but we still need your help to achieve this ambition.

Here at SWAN UK we’ve currently got about 2,000 members with more making contact every day – we know however there are so many more families out there who need our support so we want to try and double our membership by 2017. Your support can help us do this!

So with Undiagnosed Children’s Day 2017 right around the corner, we have come up with some fun and exciting ways for you to get involved. In 2016 we had a range of fundraisers participating in fun runs, cake sales, raffles and much more. This year we’re letting our imaginations run wild and have come up with even more ways you can get involved – whether it’s as an individual, through your child’s school, or by getting your friends, family or company involved.

You can download our Fundraising Pack by clicking here or email and we can post one out to you.

Alternatively why not support us online? Click here to find out more.

Take part in a challenge event

Why not get involved by getting active and getting your friends, family, colleagues and neighbours to sponsor you? Sponsored walks, runs, swims, bike rides, sky dives, abseils, firewalking(!) and countless other challenge events take place all over the UK and participants are usually welcome to raise funds for a charity.

SWAN UK is registered with specialist charity events company, Do It For Charity, which offers a range of runs, cycle rides, overseas events, parachute jumps and skydives.

Why not sign up for a run as part of Virgin London Marathon, Bupa Great Run, Marathon Runners Diary or The Running Bug.

If running isn’t your thing why not look for a walking event or maybe you’d prefer to check out a variety of Bike Events?

If you really want to put yourself out there on the edge try some of the more extreme events from UK Skydiving Adventures, Charity Abseils and Survivorbility Fire Walking.

If you need help finding an event to suit you just drop us an email:

Take part in a challenge event
Host an event and/or make a collection

Host an event and/or make a collection

You can also involve your friends, family, work colleagues, neighbours, school, place of worship or club in an event or activity to raise money:

  • Coffee mornings, bake sales, barbeques, garden parties, home-selling parties, any sort of party!
  • Concerts, pub quizzes, golf days, cricket matches, sponsored walks.
  • Non-uniform and dress-down days at school or work, sponsored diets, head shaves, beard growing.
  • Babysitting, lawn-mowing, car cleaning, bag packing at your local supermarket.
  • Unwanted gift/clothes sales, car boot sales, e-bay sales.

You can also help raise funds for SWAN UK with our collection tins – maybe you could ask your local chippie or newsagent to have one on the counter?

If you would like to make a collection for SWAN UK, including as part of an event you have organised, you should consider whether you need to obtain a licence. Different collections have different rules associated with them.

Some of the most common are:

street collections, private collections, static collection boxes and house-to-house collections.

If you do need to obtain a charity collection licence, make sure you allow plenty of time. The time it takes to process applications varies greatly in different local authorities. In some areas licences can be obtained within a week, whilst in others it can take up to 12 weeks. If you need more information about whether you need a licence or not please email us:

Get your company to get involved!

Big and small companies often like to support charities, especially ones that have a personal connection to one of their employees SWAN UK is generously supported by the annual House of Fraser Charity Event thanks to one of their employees putting us in touch!

Ask if your company would like to make a donation or match-fund your fundraising activities – many employers will support fundraising activities undertaken by their staff to support charities and will match £1 for every £1 that you raise.

Does your company have a Charity of the Year scheme? If so drop us an email to let us know how we can apply:


Get your company to get involved!
Easy fundraising!

Easy fundraising!

Shopping online

Genetic Alliance UK is registered with a Easyfundraising, an online shopping club. Once you have registered it is a really easy way to raise money to support SWAN UK.



Really simple! Register with Recycle 4 Charity who will send you free post envelopes, then just send off your used print cartridges and old mobile phone to raise money for SWAN UK.

Join our community of families

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