This website and It’s Rare For Me project is organised and funded by
Chiesi Global Rare Diseases

This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases

This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases

Stories

Join our journalist Gianluca Dotti and our photographer Settimio Benedusi in their journey around the world to meet all the rare people that decided to open up and let us in their lives. Listen to their stories and to find out what rarity means to them.

Join our team on a journey across the world to meet the people who decided to open up and let us into their lives. Our mission to capture the essence of these powerful encounters has involved a team of dedicated professionals, including journalist Gianluca Dotti, photographer Settimio Benedusi, director Gianpaolo Bigoli, and photographer Marco Gualazzini.​

Listen to the stories of the people they met, and discover what rarity means to them.

More about Gianluca Dotti
More about Settimio Benedusi
More about Gianpaolo Bigoli
More about Marco Gualazzini

Moisés & Maximiliano

Diagnosed at a very young age with HoFH, Moisés and Maximiliano were given a life expectancy that seemed frighteningly limited, with very little information available. Their mother’s search for answers led to a patient association that helped bring clarity and a renewed sense of hope.
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Jason

Jason has worked in healthcare for nearly thirty years as a registered nurse. After LHON caused central vision loss, he gradually found new ways to adapt to daily life, continuing to work as a nurse while becoming involved in advocacy.
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Ahsan

Ahsan was diagnosed with HoFH at the age of seven. Refusing to give up, his father began searching for answers online, where strangers became part of their journey and helped them leave Pakistan in search of treatment and a better future for their son.
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Rosie

Rosie lives with generalized lipodystrophy. Despite the fatigue and pain it brings, she pursues many passions with enthusiasm and, supported by her family’s love, she finds the strength to be herself.
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Gianluca Dotti

Gianluca is a science journalist, graduated in Matter Physics with two master’s degrees in communication and journalism. 

As a freelance journalist, he is an author and contributor for several media outlets, including Wired Italia, the main Italian economic newspaper Il Sole 24 Ore, Forbes, Mediaset, Famiglia Cristiana, Zanichelli, Mondadori, DeAgostini, as well as local and specialized newspapers. He had the honour of interviewing Nobel laureates Serge Haroche and Steven Chu, as well as the most famous Italian science communicator Piero Angela. 

He also moderates conferences and scientific events and has been a guest on Italian and Swiss radio and television broadcasts. Driven by his passion for science and the desire to make it accessible to the public, he carried out projects on science popularization with the universities of Naples, Insubria, Bologna, Modena, the French and Swiss Embassy in Italy. 

Settimio Benedusi

Settimio Benedusi is an Italian professional photographer and journalist. He focuses on fashion, advertising and portrait photography, and works for all the major national publishers. He has been involved in photo documentation reports projects in Uganda for CBM Italy and in Haiti for NPH. 

As Artistic Director of the San Felice sul Panaro Photographic Festival, he raised awareness about countries affected by the earthquake. He is also a visiting lecturer at the IED European Institute of Design and at the IULM University in Milan. 

In 2018, he founded the “Popular Photography Collective” RICORDI STAMPATI, introducing the concept of the Printed Photographic Portrait, making personal portraits accessible to everybody. In his photographic work, he loves condensing the infinite characteristics of a person into one small gesture. He defines himself as somebody who never gives up.  

Gianpaolo Bigoli

Gianpaolo Bigoli is a director and producer born in Parma (1979). After a degree in Communication Sciences, he attended Ermanno Olmi’s Ipotesi Cinema in Bologna.​

​In 2009, he founded Wendy Film, a Parma-based company producing creative documentaries on social issues.​

​His debut “Lovebirds – Rebel Lovers in India”, produced with RAI (Italian TV broadcaster), premiered in competition at IDFA (International Documentary Film Festival Amsterdam) 2012. “Lovebirds” won several international awards and was broadcast by Raitre (Italy), UR (Sweden), RSF (Switzerland) and TVS (Spain).​

​In 2016 his “Rachel’s HIV Revolution” was produced by Al Jazeera English, broadcast in 71 countries and shortlisted for the 2017 One World Media Award. In 2023, supported by Emilia-Romagna, he directed “All That Remains”, broadcast on TVC (Spain).​

​He pairs film production with education and training to support schools, associations and third-sector organizations (Cineteca di Bologna and University of Parma).​

Marco Gualazzini

Marco Gualazzini began his photography career in 2004 at his hometown newspaper, Gazzetta di Parma. In recent years, he has primarily focused on conflicts and humanitarian crises across Africa.​

His photographs have been featured in major publications, including The New York Times, GEO, Al Jazeera, TIME Magazine, L’Espresso, and Vanity Fair. Gualazzini has received numerous prestigious awards, such as the Getty Images Grant for Editorial Photography, the Marco Luchetta Award, the PDN Award, and the World Press Photo Award.​

In 2020, the Italian Cultural Institute in Dakar inaugurated its space with a solo exhibition of his work, followed by a second solo show in 2022 at the Italian Cultural Institute in Prague to mark its centennial. These institutes are respectively the newest and oldest Italian Cultural Institutes within Italy’s Ministry of Foreign Affairs and International Cooperation.

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