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.
Saffron
Saffron has been a pioneer and a forerunner for a complex and little-known disease like Alpha Mannosidosis, an ultra-rare disease that is genetically inherited.
Peter
One in every half a million: this is the estimated prevalence of Alpha Mannosidosis, an ultra-rare hereditary disease due to the deficiency of the enzyme called alpha-mannosidase1. Peter is a shy boy who has faced a very long journey before receiving a diagnosis.
Eliane
There are medical conditions that totally change your life and this is the story of Eliane and her journey with Leber’s Hereditary Optic Neuropathy (LHON), a rare degenerative disease of the optic nerve.
Chiara
Chiara was born and raised in Italy and soon diagnosed with beta thalassaemia major, a severe anaemia requiring regular blood transfusions and hospital check-ups.