Flyer describing conferenceEVENTS

OI Conference in Bologna

Would you be interested in attending a conference about patient engagement in OI research in Bologna, Italy? The conference takes place on June 13th 2024. It is organized by the consortium Remedi4All in collaboration with OIFE, As.It.OI (Italian OI-association), ERN BOND (European Reference Network on Rare Bone Diseases) and EURORDIS (Rare Diseases Europe). Tickets are…

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YOUTH

OIFE Youth Event in Italy

Written by: Malene Sillas Jensen & Lars Nesset Romundstad Time again for young people with OI to come together The 7th of September 2023, it was once again time for the young people of the European OI community to come together. This time in Lido di Jesolo, in the Veneto region of Italy, one hour…

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RESEARCH

4Frailty Project – Gait analysis and HR-pQCT in Italy

The IRCCS Istituto Ortopedico Rizzoli in Bologna, Italy has started recruitment of patients for two clinical studies. And the Italian OI organization As.It.OI (Associazione Italiana Osteogenesi Imperfetta Onlus) is helping with recruitment. The first 4Frailty project “Intelligent sensors, infrastructures and management models for the safety of fragile patients” – involves the use of an advanced…

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ADVOCACY

Covid-19 Helpline in Orphanet Journal

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…

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STORIES

Artists with OI: Chiara Bersani

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…

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STORIES

Artists with OI: Veronica Tulli

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…

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STORIES

Artists with OI: Fabiano Lioi

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?…

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