The Ehlers-Danlos Support UK: March 2022

Name and type of organisation: The Ehlers-Danlos Support UK (registered charity no. 1157027)

Fundraising method: Online 

Code themes examined: Restricted donation 

Code breach? Yes 

The complaint 

The complainant was concerned that a fundraising campaign from The Ehlers-Danlos Support UK (the charity) misled donors, as they believed the charity was not using the donations for the intended purpose, nor seeking donor consent for a change of purpose.

What happened?

The complainant approached an academic researcher with a hypothesis to manage symptoms of hypermobile Ehlers Danlos syndrome, and they agreed to collaborate with the complainant to conduct research into this. The complainant later joined the research team and a fundraising campaign was launched by the charity to raise funds for the research. The complainant featured in several fundraising materials to support the campaign.

By the end of 2018, all the funds needed for the research had either been donated or pledged. However, following a peer review of the research proposal, the charity only agreed to fund the initial stages of the research, leading to the complainant’s withdrawal from the project.

The researcher then submitted a proposal for an alternative research project, to test a different hypothesis, which was approved by the charity. The charity sought advice from the Charity Commission for England and Wales (the Charity Commission) on whether it could spend the funds raised on the new project. The Charity Commission advised that the charity would need to make its own assessment about whether the original appeal had failed and provided guidance on this. The charity reached the decision that the overall purpose had not changed and therefore the appeal had not failed. 

The complainant raised concerns to the charity that it had not made clear to donors that they were no longer involved in the research, nor was their hypothesis being tested. The complainant was unhappy with the charity’s response and brought their complaint to us.

Our decision

Having reviewed the fundraising materials, we reached the view that the charity gave donors the clear impression that it was fundraising for a specific research project, based on the complainant’s hypothesis. We noted that the charity had informed the charitable trusts who had pledged large donations of the change in research plans, suggesting that the charity was aware it would not be using donations in the way it had led donors to expect. The charity did not seek permission from other donors. 

We did not agree with the charity’s assessment following receipt of Charity Commission guidance that it was able to reallocate the funds to a new project without first treating the appeal as failed and taking the necessary steps in line with the Charity Commission’s regulations. The charity’s fundraising appeal had not included wording to set out a secondary purpose for funds if the original intended purpose failed. We therefore found that the allocation of funds raised for the original project to the new one represented a change in purpose that would not have matched at least some donors’ expectations of how their donations would be used.

We found that the charity had breached the section of the Code of Fundraising Practice (the code) that requires that all funds raised for a particular cause must be used for that cause, as well as the section that says charities must make sure donations are used in line with any representations they make in fundraising materials about how the money will be used. 

Separately, we found that the charity had breached the section of the code that requires them to include a statement about what would happen to funds if the total funds received were insufficient or exceed the target. 

We recognised that the complaint was unusually complex due to the pre-existing relationship between the parties which had broken down. We found that the charity responded promptly and gave reasons for its decisions. We also found that given the seriousness of the concerns, the charity acted appropriately in escalating the complaint to its Chair. We noted that as the charity considered it was justified in using the funds raised for the revised research project, it was unlikely to resolve the complaint with a response which maintained this position.

We were critical of some specific comments the charity made when responding to this complaint. However, we did not consider that the charity had breached the code in relation to complaints handling. 


We recommended that:

  • The charity treat the appeal as failed and seek urgent advice from the Charity Commission regarding the process it should follow to inform donors. 
  • The charity review its website and social media posts to identify and remove any live links to donate pages for the campaign and to clarify where funds received will be allocated.
  • The charity issue a written apology to the complainant.


The charity agreed to comply with our recommendations, including the need to apologise to the complainant for the code breaches identified. We asked the charity to write to us within two months of our final decision to outline the action taken in response to our findings and recommendations.