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.

Konstantinos

Konstantinos is a young boy who has just come of age. He has been diagnosed with nephropathic cystinosis, an ultra-rare, progressive, multisystemic disease that usually appears in the first few months of life.

Haiko

Haiko is a boy who is facing his own complex path to adulthood and living with the ultra-rare genetic disorder called Alpha Mannosidosis.

Paola

Leber’s Hereditary Optic Neuropathy (LHON) has been diagnosed to Paola over thirty years ago, and today she is active in helping those who have recently received a diagnosis leading to blindness.

Ria

More than 15 years after the diagnosis of a rare inherited lysosomal storage disorder called Fabry disease, with a very complicated clinical situation, Ria looks at her life and to the future with the right perspective.

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.