It’s rare for me tells the stories of people with rare diseases, supporting the shift of the word ‘rare’ to a positive connotation. This project serves as an internal repository where all materials related to patient stories will be collected. Everyone must use these materials to help amplify the voices of people living with rare diseases. 

By sharing and utilizing these stories, we can raise awareness, foster understanding, and continue to empower those who live with these conditions, ensuring their experiences reach a wider audience.

We began collecting materials at the end of 2022, when a journalist and a photographer toured Europe to capture the stories of people who share the same desire to give voice to their own experiences.

The goal of the photographs by Settimio Benedusi was to highlight the uniqueness of each person, who posed with an object they are particularly attached to or perceive as precious or rare. The rarity of the object symbolizes the rarity and individuality of the person.

The stories of people living with these diseases were captured through videos. The purpose of the interviews by Gianluca Dotti was to give a voice to these individuals and gather testimonies from patients and caregivers who openly share how they cope with daily life, their challenges and solutions, as well as their fears and emotions.

The project does not stop here; it will continue to move forward with new collaborators to refresh the photographic style and optimize the videos, all while staying true to our mission of amplifying the voices of people living with rare diseases.