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.
Sebastian
Sebastian was diagnosed with LHON while studying architecture. He bravely started over, trained as a massage therapist, and continues to pursue a life where his condition does not define him.
Alexandru
Alexandru was diagnosed with Fabry Disease after years of unexplained symptoms. His experience led him to found the Romanian Association of Patients with Fabry Disease, giving others the support he once needed himself.
Tim
Diagnosed with LHON at 21, Tim went through a long, difficult period, that felt very lonely. Sport became his lifeline, helping him rediscover meaning and motivation—and fatherhood gave him the drive to keep going and be a source of strength for his children.
Moa
Moa is a 25-years old woman who was diagnosed soon after birth with Nephropathic Cystinosis. Inspired by her own journey, she is now pursuing a career in nursing, driven by a deep understanding of what it means caring for others.