Fundraising policy and ethical framework

The Ehlers-Danlos Support UK (EDS UK) fundraises to deliver on its mission to offer support to anybody touched by any of the Ehlers-Danlos syndromes.

We have signed up to the Fundraising Regulator’s Code of Fundraising Practice  and all our fundraising will be open, honest, fair and legal.

This document sets out our policy on ethical and other issues within fundraising. All EDS UK staff and trustees involved in fundraising have a responsibility to be aware of and have a thorough understanding of the ethical issues referred to in this policy.


EDS UK respects the rights of its supporters to clear, truthful information on the work of the organisation; to openly report how we spend donated and statutory monies and to manage donors’ information responsibly.

We will comply with the Charity Commission and UK law in every respect, including those regarding openness and honesty with our supporters and members of the public.

As a signatory to the Fundraising Regulator’s Code of Fundraising Practice we follow its Fundraising Promise, which helps to ensure that organisations raising money for charity from the public do so honestly and properly.

We will follow the Fundraising Regulator’s Code of Practice with regard to fundraising and vulnerable or potentially vulnerable people. We will not accept donations from people we know or suspect to be vulnerable.

We will respect the privacy and contact preferences of all donors and comply with the Data Protection Act 2018 / the General Data Protection Regulation. We will respond promptly to requests to cease contacts or complaints and act as best we can to address their causes.


We abide by the law which requires us, in deciding whether to accept or refuse a donation, to consider which action is in the charity’s best overall interest.

We will not, however, accept donations made by donors whose activities appear to be in direct conflict with the best interests of our beneficiaries, for instance companies that manufacture tobacco products.

We will not undertake business with companies or individuals who participate in activities which could cause detriment to the charity’s reputation; or which will disproportionately decrease the amount of donations to further the work of the charity.

The responsibility of the judgement on whether EDS UK should refuse a donation lays ultimately with its board of trustees. Our process is that a due diligence check will be carried out on the source of all donations of £5000 or more, that these will be reported to the board of trustees, and that the board will confirm acceptance of the donation(s) – or if thought fit, instruct that the donation be declined.


If a supporter makes a donation in error or changes their mind about donating to The Ehlers-Danlos Support UK, we will provide a refund providing they contact us within 7 days of the donation being made. Where a donation is made by card, the refund will be credited to the card from which it was taken. Donations made by Direct Debit are covered by the Direct Debit Guarantee.

Commercial partners

EDS UK only works with organisations who adhere to the regulations governing their sector and whose codes of conduct and policies align with its own. All terms of work with commercial partners will be agreed in writing. EDS UK will not endorse products, treatments or companies.

Research approach

EDS UK funds research to improve knowledge about all types of EDS and to improve their diagnosis and treatment. The majority of research we fund does not involve animals. We support the 3Rs guiding principles underpinning the humane use of animals in scientific research (replace, reduce, refine) and research which aligns with or helps to advance these principles will be favoured where animals are involved.

Use of donations

If supporters wish their donation to be allocated to a specific area of EDS UK’s work (e.g. research), they may make a restricted donation by providing written instructions to this effect with their donation. We will always respect this. We will also be open with donors about the status of our restricted funds and the likely timescale of the funds being used.

Policy Review

We are committed to keeping this policy current and relevant. It will be monitored and reviewed every two years or when there is a legislative change.

Approved by trustees: 28th November 2020

(Previous review: October 2018).