Innovation in rare disease is advancing at a rapid pace, but new global research from Havas Life London finds that stigma continues to undermine its real-world impact, shaping trust, diagnosis and engagement across healthcare systems and beyond.
The report, Stigma: The Invisible Multiplier of Burden in Rare Disease, draws on insights from over 250 people living with rare conditions and caregivers across multiple markets, revealing 89% of respondents have experienced unfair treatment because of their condition. Notably, healthcare settings emerged as the single largest source of stigma-related moments, accounting for 20% of reported experiences.
The research highlights widespread diagnostic dismissal and disbelief, with 42% of respondents saying doctors or nurses did not believe them or take their symptoms seriously, while 41% reported hearing the phrase ‘you don’t look sick’, a form of appearance-based stigma closely linked to emotional harm and delayed care.
Stigma was found to be cumulative rather than episodic. Participants experienced a median of three different types of stigma, with repeated dismissal, disbelief and exclusion shaping how individuals engage with healthcare. Many reported editing what they disclose to clinicians, preparing for pushback before appointments and relying on peer networks rather than healthcare systems to navigate care. Over time, these experiences erode trust, delay diagnosis and weaken engagement with treatment, education and support.
The study also identified more than 1,500 negatively charged emotional responses linked to stigmatising experiences. Healthcare-related stigma was most strongly associated with fear, frustration, powerlessness and feeling undermined or disrespected, underscoring the deep emotional toll stigma takes on people living with rare conditions and their families.
“Innovation in rare disease is accelerating, but innovation alone does not determine impact,” said Afshan Hussain, Global Rare Disease Lead at Havas Health. “When stigma shapes the systems surrounding care, it slows diagnosis, weakens trust and limits engagement long before a therapy reaches a patient. Through Rare Next, we are integrating lived experience into strategy and designing engagement that aligns science with emotional reality. Addressing stigma as a structural barrier is essential if progress is going to translate into real-world outcomes.”
“Rare disease already brings clinical complexity, but stigma adds a layer of friction that compounds burden across every interaction and decision,” said Gemma McCarthy, Group Strategy Director and Rare Disease Lead at Havas Life London. “It’s vital that we as an industry realise this isn’t just a social issue. If we want clinical advancements to reach the people they are intended to serve, we must address stigma as a system-level issue, not a side effect, and make stigma itself the rare disease.”
Importantly, the report identifies where change matters most. It shows that when stigma is recognised as a structural barrier rather than an interpersonal issue and when lived experience is validated early, trust and engagement improve. Communications and support that reflect emotional reality rather than dismissal are critical to rebuilding credibility across the care journey.
The report calls on healthcare systems, educators, employers and industry leaders to recognise stigma as a fundamental barrier to equitable care and quality of life. Addressing stigma is not only an ethical responsibility, but a strategic one, central to improving diagnosis, strengthening trust and ensuring scientific progress translates into meaningful impact.
This latest research further strengthens Havas Health commitment to giving a voice to global rare disease communities through its Rare Next thought leader and insights platform. For further information and to download the full report, visit havasrarenext.com.
Methodology
Two online surveys were conducted in partnership with Rare Patient Voice and Unique, a Rare Chromosome Disorder Support Group, between December 2025 and February 2026. Participation was not restricted to geography or condition, with 86% of the people surveyed living in five markets – the UK, the US, Australia, Canada and Germany. Weighted cross condition comparison was conducted by coding individual diagnoses into clusters informed by internationally recognised ICD categories, and 251 individuals quantitative and qualitative experiences of being treated unfairly as a direct result of their or their child’s condition were analysed. Opentext data was examined through content analysis to identify key patterns in type of stigma experienced and the emotional response to the situation.