The ‘It’s Rare for Me’ project

Living with a rare disease has many implications. These people and their families often face long paths to reach the correct diagnosis, manage their conditions, find healthcare professionals and patients associations that can support them in finding a new way forward. All these difficulties contribute to generate a strong fear for the future and a perception of loneliness in their daily challenges.

Sharing your voice, feeling heard, finding somebody that is facing your same challenges can help these people feel less lonely, feeling part of a network: this is “It’s rare for me” project. It wants to give voice to people living with rare diseases that have the opportunity to tell their stories in a special way: through something or somebody that is rare to them. In this way, the project encourages a shift from the negative feelings tied to being a rare patient, to the positive idea of being a person that lives with a rare disease and is part of a worldwide community where we are all different, all rare and therefore unique.

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. Browse the map and click on the dots to listen to our protagonists, their stories and to find out what rarity means to them.

Thomas

Thomas is a small, sweet, and lively child living with determination and courage his young life with Alpha Mannosidosis.

Camillo

Camillo is a high school student, dreaming of becoming a lawyer or an economist. During his childhood he was diagnosed with beta thalassaemia major, a severe anaemia, also known as Mediterranean anaemia.

It’s rare for me &
Chiesi Global Rare Diseases

Everyone has a story to tell and each story is worth being told and heard. This is the starting point to raise awareness on rare diseases.

Stories are incredibly powerful and sharing them has the potential to connect and help people feel less lonely. They offer valuable insights that go way beyond the statistics and the outcomes: they have the power to inspire, humanize, challenge assumptions and create an emotional response that may lead to action.

At Chiesi Global Rare Diseases, “we listen to and understand the needs of the community that we are privileged to serve”. By listening to them, we learnt that one of their main needs is feeling understood, included, being part of a community. For these people being “rare” too often means knowing nobody that is like you, that feels like you that can understand you, because the disease is so rare. 

Through “It’s rare for me” project, we want to keep challenging this perception, promoting a positive concept of rarity, intended as uniqueness. In this framework, “being rare does not mean being alone”, just different. As we are all different, sharing and spreading this concept can promote inclusion, listening and empathy towards people with rare diseases. 

This is one of the ways we respond to the community need, this is how we are making a rare difference”.