Chiesi UK

21/10/2025

“People think I’m drunk.”

Sara, 63, from Devon, has lived with asthma since she was young and was later diagnosed with chronic obstructive pulmonary disease (COPD). Her breathlessness means she often has to force her words out quickly in one breath - which some mistake for shouting.

Instead of compassion, Sara has faced judgement. Struggling to breath and talk, people assume she’s drunk - avoiding her in the street, hanging up during calls, even shouting at her.

In a Chiesi UK survey of over 1,000 people living with chronic or genetic health conditions, or who have experienced a premature birth, 57% say fear of judgement has stopped them seeking support. For Sara, living with COPD is hard - but the bias she faces because of it is harder to live with.



UK-CHI-2500862 | September 2025

16/10/2025

“Am I incapable of being a mother?”

Sue, a mum of three from Nottinghamshire, faced judgement for having
premature births due to type 1 diabetes. Despite following medical advice, she often felt judgement from people in her life. She feels she’s been labelled as ‘weak’ for not being able to carry her babies to full term, as though her condition and choices made her a bad mother.

Sue’s story highlights how stigma can lead to shame, isolation and self-blame.



UK-CHI-2500860 | September 2025

14/10/2025

“People think I’m an addict.”

Ben, 32, from Leicester, was diagnosed with a rare autoimmune liver disease and received a life-saving transplant in April 2024. Despite his condition being unrelated to lifestyle, the stigma was immediate - even from those closest to him.

Assumptions about liver disease left Ben feeling dismissed and ashamed at a time he needed support most.

Ben is speaking up as part of ‘Look Beyond the Bias’ because he wants to be a voice for people who feel unable. Everyone, regardless of their background or circumstances deserves support.



UK-CHI-2500861 | September 2025

10/10/2025

World Mental Health Day is a moment to come together - to talk openly and remind one another that everyone’s mental health matters.

For some, added stigma can make talking even more difficult. In our recent survey of over 1,000 people with chronic or genetic health conditions, or who have experienced a premature birth, 71% said they have avoided being open about their condition, and 56% said stigma has affected their decision to speak up or advocate for themselves.

Look Beyond the Bias ambassador Dame Laura Kenny shares how assumptions can lead people to stay silent…



UK-CHI-2500857 | September 2025

09/10/2025

Look Beyond the Bias – the headlines

In our UK survey, 72% of people told us they feel guilt or unworthiness due to
their health condition. 79% said they’ve played down the impact their condition is having on them due to fear of judgement.

Over 1,000 people living with chronic or genetic conditions, including: asthma, chronic obstructive pulmonary disease (COPD), rare diseases, those who have undergone organ transplants and parents of children born prematurely shared how bias has affected them – and where this bias has come from.

Find out more https://www.chiesi.uk.com/look-beyond-the-bias



UK-CHI-2500923 | September 2025

Look Beyond the Bias is our commitment to challenging stigma, judgement and blame. Particularly for people with health conditions...

08/10/2025

“Drunk.” “Weak.” “Addict.”

These are the labels Sara, Sue and Ben told us they have lived with for a long time - not because it’s true, because of bias.

Sara has asthma and chronic obstructive pulmonary disease (COPD). When she’s breathless, people can misinterpret her behaviour as being rude or drunk.

Sue, a mother of three children born prematurely, was made to feel weak - as if not carrying to full term was some sort of personal failing.

Ben, a liver transplant recipient with a rare liver disease, has been wrongly labelled an addict – with people assuming his transplant is due to alcohol or drug abuse.

These aren’t isolated stories. They’re a reflection of a deeper problem.



UK-CHI-2500821 | September 2025

07/10/2025

Today we launch ‘Look Beyond the Bias’ – our powerful campaign designed to challenge the stigma that shapes the experience of people living with chronic and genetic health conditions.

We surveyed over 1,000 people in the UK across asthma, chronic obstructive pulmonary disease (COPD), rare diseases, those who have undergone organ transplants and parents of children born prematurely. 70% said they’ve experienced health bias, defined as the experience of stigma, judgement or blame.

Bias can silence people, delay diagnosis and leave certain conditions overlooked. Sara has been labelled “drunk” – a reaction to the breathlessness caused by her COPD and asthma, which is often misunderstood.

This campaign is about seeing the person, not the label - and ensuring everyone has access to the care and support they need regardless of their background or circumstances.

Follow to hear more and join the conversation.

UK-CHI-2500819 | September 2025

26/09/2025

Organ Donation Week 2025 raises a critical reality: over 7,000 people in the UK are currently waiting for an organ transplant.

One donor can help up to nine people. Although England operates an “opt-out” system, families are still consulted so clear communication about your wishes remains essential.

During Organ Donation Week, it’s important to support calls from the transplant community to share information and encourage open conversations about organ donation.

UK-CHI-2500926 | September 2025

28/08/2025

A landmark event, co-hosted by Chiesi UK and Ireland and Metabolic Support UK, highlighted the profound impact authentic representation of people with rare diseases has on self-esteem, community support, and public awareness.

14/07/2025

🎈Lift-off begins…

Over 3.5 million people in the UK live with a rare condition. In our True Faces of Rare study with Metabolic Support UK, 80% of participants rated authentic imagery as critically important - a clear call for better representation.

Chiesi’s ‘True Faces of Rare: Shaping Visual Representation Together’ will bring together lived experience and expert voices to reshape how rare diseases are portrayed within imagery such as patient materials, the media and beyond.

See who’s speaking at the event 👇



This video is AI-generated with post editing

IE-CHI-2500053 | July 2025

23/06/2025

3 weeks to go and momentum is building! 🔊

Join us for ‘True Faces of Rare: Shaping Visual Representation Together’, organised with Metabolic Support UK, a timely conversation on why imagery in rare disease content matters, and what needs to change.

There is growing global recognition around this issue, with the World Health Organization (WHO) recently passing its first-ever resolution on rare diseases, calling for equity, inclusion and visibility for over 300 million people worldwide.

We look forward to the opportunity to listen, learn and rethink how we can better represent the rare disease community.

UK-only | Open to those involved in rare diseases — from patients and carers to clinicians, policy-makers, storytellers, industry professionals and communicators.

📅 17 July | 12–6pm | QEII Centre, Westminster
🔗Register now 👉 https://forms.office.com/pages/responsepage.aspx?id=ibTRgNZawkW3Vw74nqAsW6d63tZDFO1EmSPXBwIgv4pUQlRVOEgxNlNFU1JONVVZWkJWR0xHU0ZBRC4u&route=shorturl



This video is AI generated.

UK-CHI-2500620 | June 2025

09/06/2025

Attention London, it’s time to get real 🔊

On the 17 July, we’re hosting ‘True Faces of Rare: Shaping Visual Representation Together’ with Metabolic Support UK - an event inspired by our research showing that 80% of people affected by rare conditions want to see images of real people with rare diseases in content about their condition.

Together with patients, advocates and peers we’ll explore the importance of visual representation, and how, without it, people can feel overlooked.

💬 It’s time to ask: what does true, authentic rare representation really look like?

UK-only | open to those involved in rare diseases — from patients and carers to clinicians, policy-makers, storytellers, industry professionals and
communicators.

🖇️ Register now 👉 https://forms.office.com/pages/responsepage.aspx?id=ibTRgNZawkW3Vw74nqAsW6d63tZDFO1EmSPXBwIgv4pUQlRVOEgxNlNFU1JONVVZWkJWR0xHU0ZBRC4u&route=shorturl



UK-CHI-2500617 | June 2025