Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…
Who are you and what do you do? My name is Chiara and I am a writer/creator and a performer with a disability. I am Italian and I am 35 years old. I work in different fields like performing arts, contemporary theatre and contemporary dance. In what way has OI affected your art? Honestly, I…
Interview and translation: Anna Rossi Can you introduce yourself? My name is Veronica Tulli and my stage name is LuluRimmel. I live in Rome, Italy. I am a singer, songwriter and performer. And I am quite confident in saying this. But I do not hide that at least in Italy, this is quite a bold…
Fabiano Lioi from Italy is an actor, musician and artist with OI. He has published an artistic catalog which is also and above all a journey to discover a condition unknown to many, namely Osteogenesis imperfecta. This interview was first published in OIFE Magazine in spring 2018. Who are you and what do you do?…
