Rare diseases are often discussed in statistics. A recent exhibition in the European Parliament set out to do the opposite.
For people living with rare conditions, representation shapes how they see themselves and how others understand them. Evidence shows that accurate, respectful visual portrayal can reduce isolation, improve public understanding, and counter stigma.
With that in mind, The Parliament partnered with MEP András Kulja, Chiesi Global Rare Diseases, and patient organisation EURORDIS to bring the It’s Rare for Me photography exhibition to the European Parliament — an initiative designed to build trust and foster genuine inclusion through authentic storytelling.
The exhibition placed people living with rare diseases at the centre of the conversation. A series of portraits captured these people not as cases, but as individuals with distinct identities, routines, and aspirations. Alongside this, the LHONMuseum — an immersive installation focused on Leber’s Hereditary Optic Neuropathy (LHON) — invited policymakers to engage more deeply with the lived reality of a specific condition.
“Understanding the medical aspects of rare diseases is essential but it's not enough –we must also understand the everyday experiences of people living with rare diseases”
“Rare diseases are not an abstract. They affect real people, real families… every single day,” MEP Kulja told attendees at the launch ceremony. “Yet across Europe inequalities between member states, differences in the timing of diagnosis, and access to treatment, can dramatically shape people's future, affecting not only their quality of life, but their life expectancy itself.”
In Europe alone over 36 million people are living with a rare disease, yet they often remain invisible or misrepresented in public communication, education and even in healthcare materials. “Patients consistently ask for authentic representation — real people, real lives, real stories,” said Alessio Amadasi, VP of Medical Affairs — Europe & International, Rare Diseases at Chiesi.
“Understanding the medical aspects of rare diseases is essential but it's not enough –we must also understand the everyday experiences of people living with rare diseases.
“Authentic representation builds trust, challenges misrepresentations, supports health care professionals and empowers patients and their families.”
This message was echoed by Paula Morandi, a patient advocate living with LHON and the chair of International MITO Patients, who told attendees at the exhibition: “Today we’re here to change that invisibility, that silence, by allowing visitors to walk in the footsteps of a person living with LHON.”
Find out more about the It’s Rare For Me project and discover individual stories by visiting https://itsrareforme.com/
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