Undiagnosed Children’s Day – Stay in the know

The legal bit!

We are delighted so many people are getting on board to fundraise for undiagnosed children’s day!

We want to make sure you stay safe and legal so please take a few moments to check out details below:

Legal requirements

If you choose to fundraise or us please be safety conscious and aware of any legal requirements that may apply.

  • If you are producing any promotional materials, such as posters or leaflets, please contact [email protected] for the appropriate logo format and brand guidelines. All materials must state ‘SWAN UK is an initiative of Genetic Alliance UK, registered charity numbers 1114195 and SC039299’ and must be approved by SWAN UK.
  • If children are involved in fundraising, please make sure that they have permission from their parent or guardian, and are properly supervised by a responsible adult.
  • If you are planning to hold a raffle where tickets are sold before the day of the draw, please note that there are some legal guidelines around this. Please contact [email protected] for more information
    Consider what insurance you may need in place. Many external venues will have Public Liability Insurance, but you should always check with them that this will cover your event.
  • If you plan to sell alcohol at an event, you may require a licence from your local authority.
  • If you are planning to hold a public collection for SWAN UK, you will need a permit from your local authority. We would need to see a copy of this before issuing materials such as collection buckets.
  • If you plan to collect on private property such as a shopping centre, you must obtain permission from the landowner or manager.
  • Think safety! Please ensure that your event does not pose any risk to yourself or other people attending. Please note that we cannot accept any responsibility for any loss, damage or personal injury

Lottery Requirements

  • An ‘incidental non-commercial lottery’ doesn’t require any permissions or licences.These are held at non-commercial events, such as school fêtes. All ticket sales and draws must take place during the event.
  • All tickets must be sold at the location during the event and the result made public while the event takes place.
  • The promoters of the lottery cannot deduct more than £100 from the proceeds in expenses incurred, such as for the cost of printing tickets, hire of equipment, etc.
  • No more than £500 can be spent on prizes (but other prizes may be donated) and the raffle cannot involve a rollover of prizes.
  • If you are planning on selling tickets prior to the event, this falls under the terms of a ‘small society lottery’ and a licence is required. You can get this from your local authority.

Click on the link below for more information on the legal requirements when holding a raffle:


For more information, or if you have a specific question please email Kharishma at: [email protected]

The 29th of April is Undiagnosed Children’s Day – a nationwide event to 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.

6000 disabled children are born every year with a syndrome without a name.

We have a big ambition here at SWAN UK – we want to ensure every one of these families has the support they need, when they need it.

We currently has around 2000 members with more making contact every day but we know there are so many more out there who need our support – our aim is to double our membership by 2017.

This year our Big Ambition is even more challenging for us as both of our main grants from The Big Lottery end this year, your fundraising will make a direct impact on how much support we are able to continue providing to families after they finish.

Join our Community Of Families