A Chiesi UK and Metabolic Support UK survey on patient imagery preferences, and what has happened since.
Health materials about rare and chronic conditions often use stock photography. It is a common shortcut, but for you or a loved one living with a rare condition, an image of someone who clearly doesn’t have it can make the material feel generic, even when the information itself is accurate.
The survey covered in this article was published in the journal Rare in February 2025. It was written and funded by Chiesi UK and Metabolic Support UK (MSUK), as part of their joint True Faces of Rare campaign, which challenges the reliance on stock imagery in rare disease communications. All five authors are Chiesi or MSUK employees, and Chiesi funded the research.
What the survey asked
The two-question digital survey ran from September to October 2024 and drew 50 responses, gathered through MSUK, direct outreach and the Ectodermal Dysplasia Society. Respondents, patients and carers, were asked how important it was to see people affected by their specific condition in disorder-specific materials, on a scale of one to ten, and to explain their answer in their own words.
The average importance rating came out at 8.2 out of 10, with 80% of respondents scoring it 8 or above. 8% rated it low, typically where the condition in question has no visible physical characteristics.
Why authentic images matter to patients
The free-text responses give more detail than the score alone. One recurring point was relief at not feeling alone:
“It’s important to see images because it shows you’re not alone and there are others in the same situation.” (survey respondent)
One parent described the same effect for their child:
“Because I can show my children they are not the only ones.” (survey respondent, parent)
Some respondents said it helped clinicians recognise a condition they had not encountered before:
“A lot of health professionals cannot identify my condition, then I show them a pic from our website and they can relate the picture to the condition.” (survey respondent)
The caution patients raised themselves
Not all respondents agreed that a photograph is the right tool. Some pushed back, particularly where the condition has no visible presentation:
“I have hereditary fructose intolerance (HFI), so physical appearance is not unique or relevant to my condition. People who have HFI are not recognisable by any physical characteristics.” (survey respondent)
Others were concerned that repeated use of a small set of images could suggest a “typical look” for a condition that varies widely between people. The paper recommends using a diverse range of images, varying age, gender, ethnicity and presentation, rather than repeating a single representative face.
From pledges to progress
The survey ran in September and October 2024. Its findings fed into a Westminster event in July 2025, where more than 100 rare disease stakeholders, patient groups, regulators, clinicians, media and industry, pledged to prioritise authentic representation in their own communications. This year’s follow-up event, on 17 September 2026, is billed as “From Pledges to Progress.” It includes a new survey tracking progress against last year’s pledges, a Visibility Fund for smaller patient organisations, and a talk from ethicist Dr Tony Lockett on AI-generated patient imagery.
What this means in practice
For anyone producing rare or chronic disease content, patient organisations, research institutions or industry, the findings point two ways: authentic imagery builds trust where it’s used, but it is not a substitute for talking to the community being represented, and it is not right for every condition. The survey itself is small, 50 respondents from two patient groups, and the authors state this limitation themselves.
My Health Focus has pledged to Chiesi and MSUK’s True Faces of Rare campaign, to prioritise authentic imagery in our own content where we can. This is an approach we already try to follow; the pledge makes it a standing commitment rather than an informal one.
Medical disclaimer
This content is for general information only and is not a substitute for professional medical advice. Always consult your GP or a qualified healthcare professional if you have any concerns about your health.