True Faces of Rare: Shaping visual representation of people living with rare diseases

Patient organisations and company partners

Metabolic Support UK, Chiesi UK and Ireland

Summary

True Faces of Rare (TFOR) is a first-of-its-kind collaboration between Chiesi UK and Ireland and Metabolic Support UK. The project set out to challenge the reliance on stock photography in rare disease communications and replace it with authentic imagery of people living with rare diseases to drive greater connection and inclusion.

Patient-centred research published in early 2025 provided robust evidence of the need for change. It was followed by a landmark Westminster event attended by more than 100 rare disease stakeholders from patient groups, regulators, clinicians, media and industry. Participants pledged to prioritise authentic representation, creating a measurable step towards change in the visual representation of people living with rare disease.

Project Type

Campaign

Project Focus

To promote the use of authentic imagery of people living with rare diseases in health communications

Contracting process

Chiesi and Metabolic Support UK had an established relationship and had previously worked together on a peer-reviewed paper exploring patient preferences in relation to imagery. As such Metabolic Support UK was the natural partner for Chiesi for the next stage, a public event to bring the evidence and the voices of those living with rare diseases to life. The event was held on 17 July 2025, a date chosen to symbolise the 1 in 17 people living with a rare disease.

Contracting was approached transparently, setting out clear boundaries around independence and co-ownership. Both parties agreed on processes for data sharing, communications and event delivery. Metabolic Support UK shared their appreciation for Chiesi’s flexibility and patient-first focus.

Delivery evolved from the research into a co-designed two-part programme: Westminster event (fee-and non-fee for service agreements) and pledges for change, whilst ensuring the patient voice was centre-stage

Implementation

The research collaboration provided both a foundation of trust and the evidence to build the next steps of the campaign. Chiesi and Metabolic Support UK jointly explored how to amplify the research findings. Engagement focused on open dialogue and shared ambition to shift the current standard for visual representation across the health information sector.

Metabolic Support UK drew on the direct voices and experiences of their diverse community to meaningfully shape the project. Collaboration was iterative and agile, with strong coordination between teams. People living with rare diseases validated ideas throughout, contributing their perspectives and imagery. This helped overcome the challenges of different stakeholder expectations and ensured sensitivity in image use.

The Westminster event was attended by more than 100 rare disease stakeholders from patient groups, regulators, clinicians, media, and industry. Organisations were invited to pledge their support to this statement:

“We aim to ensure that whenever our organisation creates content or materials about rare diseases, any images of real people featured reflect individuals who are directly affected by those specific conditions.” As of November 2025, 48 organisations have taken the pledge

Impact

The most important impact of the project is the commitment to change the approach to visual representation of people with rare disease by stakeholders who pledged at the event. Receiving highly positive feedback from participants and stakeholders has reinforced the value and impact of the collaboration.

The True Faces of Rare campaign has received recognition from the World Health Organisation; the project aligns with its recent resolution to position rare diseases as a global health priority. The Patient Information Forum (PIF) has also updated the PIF TICK criteria to strengthen wording on the use of authentic as well as representative imagery.

Benefits

Impact on patient organisations:

Metabolic Support UK added value with their first-person perspectives and understanding of disability rights, helping shape this initiative into a world-first project putting the use of authentic patient imagery at the heart of communications.

Impact on industry partner:

The collaboration allowed Chiesi and Metabolic UK to jointly lead a movement to embed authentic representation and successfully convene the rare disease ecosystem. The key benefit was commitment to meaningful change, overcoming initial scepticism about whether the demand for authentic imagery from people with rare disease would gain traction.

“True Faces of Rare is a project that uniquely highlights how patient groups and pharmaceutical companies can use their specific knowledge, networks and resources to the best shared advantage, leading the call for change across the rare disease sector.” Metabolic Support UK

Top tips

● Anchor projects in a simple, powerful hook.

● Build on existing collaborations - continuity breeds trust.

● Put people living with rare diseases at the centre from day one.

● Translate inspiration into measurable commitments.

● Image selection must be thoughtful, reflecting diversity in age, gender, ethnicity, and disease presentation, while avoiding stereotypes or oversimplification.

“This project reflects the best of partnership working - evidence, empathy, and action. Having already co-authored research with Metabolic Support UK, it was natural to join forces again for the Westminster event and drive real change together.” Chiesi UK and Ireland

DOP - UK-CHI-2501107 | December 2025