UK Fundraising in aid of PTEN Research


Please bear in mind that this note is relevant only if you are fundraising in the UK. If you plan to fundraise outside the UK, you may need to comply with local laws relating to philanthropic fundraising, which can be a highly regulated activity.


As a charitable organisation, our mission is to fund and facilitate research that will lead to better treatments and improved outcomes for PTEN hamartoma tumour syndrome (PHTS).

So that we can continue and accelerate our charitable mission, we are very grateful to anyone who volunteers to raise funds in the UK in aid of PTEN Research.

Although at present, PTEN Research has not engaged anyone to fundraise on our behalf,  we would love to hear from you at if you are planning, or have already staged, a fundraising event, however big or small.

Whether you are organising a run, a bike ride, a raffle, a golf tournament, or a coffee morning, please be aware of the following points which are set out for your help and guidance.

The Code of Fundraising Practice (‘The Code')

The Code is issued by the UK’s Fundraising Regulator, and states that:

  • ‘In aid of’ fundraisers are responsible for organising all aspects of their fundraising. That means PTEN Research cannot accept any liability for your fundraising.
  • ‘In aid of’ fundraisers must be sure to use the expression ‘in aid of’ PTEN Research in their fundraising. That makes it clear that you, not PTEN Research, are doing the fundraising.

Organising your event

  • Before the event, please plan a budget, as we cannot be held responsible for any costs, taxes, or expenses incurred or arising in connection with your fundraising activity.
  • Please don’t carry out any activity that could put PTEN Research’s reputation or name at risk.


When fundraising in aid of PTEN Research, be sure to say how donors’ money will be spent, keeping our mission in mind, and using the following points as reference.

  • As a registered charity, we will use donations to support our mission to fund and facilitate research that will lead to better treatments and improved outcomes for PTEN hamartoma tumour syndrome (PHTS).
  • We do this by funding PHTS research projects and bringing together a global network of PHTS focused experts and other key participants.

Keeping your fundraising safe and legal

  • Raising a collection can be a good way to fundraise. However, please get the right permissions and licences before raising public collections (usually from the local council or landowner). Please review the Chartered Institute of Fundraising’s guidelines for more information. 
  • Please take all reasonable precautions to ensure the wellbeing of your guests, for example, with respect to the venue you select, and any refreshments or entertainments you plan to provide, making sure you comply with regulations for health and safety, and food or drink.
  • Please consider if any insurance is needed and ensure this is in place before any event, as PTEN Research’s insurance will not cover you.
  • If you decide to organise a raffle, please bear in mind raffles are subject to gambling legislation. If you are planning to sell tickets over several days, you may need a licence. Check in with the Gambling Commission to make sure you are keeping within the rules.

What to do with donations collected

If you are handling offline sponsorship money or collections, please ensure that:

  • Two trusted persons are present when accessing funds and counting.
  • PTEN Research is advised once funds are sent by emailing
  • All funds collected are sent to PTEN Research within two weeks of receiving them, using the reference ‘Donations’, plus your name.

Getting your donations to us

  • By online payment: Our preference would be for you to get the money to us online. If you chose this method, please donate via our KindLink page. All donations you receive will be processed and sent to us directly.
  • By Post: Please send your money to PTEN Research by downloading our postal donation form. Please fill in your details and send the form back to us. If you decide to pay us by cheque, please attach your cheque with your name written on the back. Please note that we advise against sending cash in the post, and only recommend using postal donations if you are not able to make an electronic transfer which is much more secure.
  • Gift Aid: If your donors are UK taxpayers, please ask them to declare Gift Aid. PTEN Research will then receive an extra 25p for every pound donated, at no extra cost to donors.

Thank you for your help and support!