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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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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MEDICAL

COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 See also more resources about Covid19 in English from…

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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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