Fundraising policy

Dravet Syndrome UK commits to fundraising that is:

• Legal: All fundraising activities comply with applicable laws and regulations.
• Open: We are transparent about how funds are raised and how donations are used.
• Honest: Information provided to donors and the public is truthful and not misleading.
• Respectful: We respect donors’ rights and choices, avoiding intrusive or persistent approaches and stopping communications on request.

• The Board of Trustees holds ultimate responsibility for fundraising and ensures effective oversight of fundraising strategies, risks, and compliance.
• Fundraising is a standing agenda item at Trustee meetings, with regular reporting and review.

Due diligence and risk assessment

Dravet Syndrome UK’s fundraising is delivered through a small number of established income streams: community fundraising, Trusts and Foundations (including the Chan Zuckerberg Initiative), corporate or major donor partnerships, our online shop, and consultative and speaking services. The level of due diligence applied is proportionate to the nature and scale of each activity.

For Trusts and Foundations, we maintain a regularly reviewed pipeline of funding opportunities. Before applying to any trust or foundation, we verify its current status and charitable objects via the Charity Commission register.

For corporate partnerships and major donors, any proposed partnership will be subject to an appropriate assessment, including a review of the organisation’s public profile and a Companies House check, before being confirmed. All corporate partnerships require Board agreement prior to commitment.

Community fundraising activities are supported in line with the Fundraising Regulator’s Code of Practice and our standard guidance to fundraisers.

The Director is responsible for ensuring these checks are carried out and for bringing any material risk or concern to the Board’s attention.

• Fundraising efforts will be planned and conducted responsibly, consistent with our charitable objectives.
• We will not use methods which are overly intrusive, high-pressure, or could cause distress to donors or the public.
• All fundraising materials will be clear and accurate about the purpose and use of donations.

• Staff, volunteers, and third-party fundraisers will be treated fairly and protected from harassment or undue pressure.
• Training and safeguarding policies will be regularly updated and complied with to maintain a safe fundraising environment.

• We will respect donors’ privacy and handle personal data in accordance with UK GDPR and data protection laws.
• Donors have the right to know how their donations are used and can request information or make complaints easily, through our published Fundraising Complaints Procedure, available on the website.
• Donation handling, receipt, and potential return of funds will be managed transparently and promptly.
• Restricted and designated funds: Where a donation is given for a specific purpose, we will use it for that purpose and keep appropriate records to confirm compliance. If we are unable to use a donation for its intended purpose, we will contact the donor to discuss the appropriate course of action.
• Staff and volunteer concerns: Any member of staff or volunteer with a concern about our fundraising practice can raise it through the process set out in our Fundraising Complaints Procedure.

• Donor data will be collected and processed lawfully, with clear consent obtained where required.
• Personal information will be securely stored and used only for lawful purposes, including fundraising, supporter communications, event management, and service improvement. Full details of how we collect, use, and store personal data are set out in our Privacy Notice, available on our website.
• We will provide donors with clear privacy notices and options to opt out from communications at any time.
• Charity soft opt-in: Where supporters have previously expressed interest in or supported DSUK, we may contact them about our work under the charity soft opt-in rule introduced by the Data (Use and Access) Act 2025. Every communication will include a clear and easy opt-out option.
• Fundraising Preference Service: We respect registrations with the Fundraising Preference Service. Supporters who wish to stop receiving fundraising communications from DSUK can register at fundraisingpreference.org.uk.

• Partnerships with external fundraisers or agencies will be governed by written agreements ensuring compliance with our fundraising standards.

Monitoring third-party fundraising activity

Where DSUK is made aware of fundraising activity being carried out on its behalf (including by individual community fundraisers) we will take reasonable steps to verify that the activity is legitimate. This includes checking that fundraising pages accurately represent DSUK, that the DSUK name and logo are used appropriately, and that funds raised are directed to DSUK.

We encourage all fundraisers to notify us of their activity so we can provide guidance and support. We use Beacon, our CRM system, to monitor incoming funds across our main channels. Beacon integrates with JustGiving and our website donation platform, providing oversight of the substantial majority of our fundraising income. We review incoming funds as a matter of routine, using the tools available to us.

We recognise that the nature of community fundraising means we cannot always be aware of activity in advance. Where concerns arise about fundraising carried out in our name, the Director will investigate and take appropriate action.

• Day-to-day compliance: The Director is responsible for ensuring that fundraising activities comply with this policy on an ongoing basis.
• Quarterly review: The Director will prepare a summary of fundraising practice and any compliance matters for review at each quarterly Board meeting. This will be recorded in Board minutes.
• Annual policy review: This policy will be reviewed by the Board annually as part of the annual planning cycle, or more frequently if there is a material change to the Fundraising Regulator’s Code or relevant legislation. The outcome of each review will be recorded in Board minutes.
• Continuous improvement: Feedback from donors and stakeholders will be collated by the Director and used to inform improvements to our fundraising approach and governance.