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. SWAN UK provides an important network supporting parents and siblings of children with undiagnosed genetic conditions.
Help us to keep providing this vital support and information to these families!
Download a SWAN UK fundraising pack for free
Undiagnosed Children’s Day
Undiagnosed Children’s Day is a nationwide event that happens on the last Friday of every April. This year it is on Friday 26 April. It is a day where we increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK. Every year we have a different theme, for 2019 it is lions and we are focusing on the bravery shown by children, young adults and siblings affected by unknown genetic conditions. Being undiagnosed affects the whole family and we want to communicate the pride that family members feel for their children and celebrate their resilience.
On Friday 26th April 2019 we ask people to get involved however they can, with their friends and families, through schools, local businesses or your employer.If you or your child’s school would like to get involved then please contact: [email protected]
Download an Undiagnosed Children’s Day Fundraising Pack
Download a Schools Activity Pack
Download lions reading list for the readathon
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 doing one of these challenges is to set up a Just Giving or a Virgin Money 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: [email protected]
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: [email protected]
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
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 boss 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: [email protected]
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 or Genetic Alliance UK and send to Genetic Alliance UK, CAN Mezzanine, 49-51 East Road, London, N1 6AH. 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 [email protected] 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