The Rares are not just numbers, they are not just statistics, they are not just exceptions to rules and genetics.
The Rares are people, strong and wonderful families, capable of superhuman strength.
In Italy, research on rare diseases is often done with the help of these families. And it is precisely at this juncture that their tenacity can be seen.
But beyond sickness, research, the daily struggle, what is there?
There are people who laugh and cry, fight and make peace, work and dream. They make the same chaotic life of all families.
In the fall of 2017 I met several Rare families. Together with them I developed a photographic project aiming to show their normality, the routine.
through them I have discovered that there is exceptionality, but it is not in situations but in people. I discovered the strength behind a smile. I discovered solidarity and generosity. Living the everyday life of Rare families, I experienced first hand the enormous difficulties that every day are forced to face. Inadequate infrastructures, almost total lack of inclusive elements in playgrounds, state inaction as regards concrete aid to families and much more.
I also discovered a fantastic network of volunteers who lend their time even for the most trivial things: help with transport, help with shopping, a friend to exchange a few words.
Documentary photography has allowed me to enter into the intimacy of these families and tell a true and authentic cross-section of life that revolves around The Rares.