If you’ve never heard of Rare Autoinflammatory Diseases, or if you think you know all there is to know, then this book is for you.
I'm Rare is a project that looks to the future of rare autoinflammatory diseases for patients and doctors.
It was created with the aim of spreading awareness of rare autoinflammatory diseases, and to develop a network of support and experience-sharing for patients and their families, among themselves and with the specialists who treat them.
Having a rare autoinflammatory disease can make one feel alone, frightened, dismayed in the present and uncertain about the future. Being able to meet people who share the same experience can help patients feel part of a large family; which is why I’m Rare is so important.
I'm Rare is not only a book, but part of a journey consisting of meetings, video interviews and activities. I’m Rare brings together rare patients, families, healthcare professionals and patient organizations with the aim to circulate news, contribute to the creation of a valuable, common knowledge base for the management of daily life and develop a network of people ready to listen, support and rely on each other – meaning, with certainty, no one will ever be left alone.
Because I'm Rare... but not alone.
230 pages of patient stories and first hand experiences
Get advice to help you, if you know someone with a recurrent fever syndrome.
Read about the multifaceted burdens of rare autoinflammatory diseases.
Navigating rare autoinflammatory diseases: our commitment to you
Uncover the complexities of autoinflammatory diseases and learn how we are focused on helping individual through awareness, connection, community, progress and change.