MEDICAL

Where to find information on OI?

There is a lot of information about osteogenesis imperfecta on the Internet. But how do you know where to find information that is good and up to date in your country or language? We recommend searching the OI-organizations for advice. Information in English can be found here: OIFE’s information about OI OIF’s Information Center BBS…

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MEDICAL

Consensus paper physiotherapy

On the occasion of the 13th International Conference on Osteogenesis imperfecta in August 2017 an expert panel was convened to develop an international consensus paper regarding physical rehabilitation in children and adolescents with Osteogenesis imperfecta. The paper has now been published. The project was initiated by OIFE’s supporting member Care4BrittleBones, but OIFE assisted with spreading…

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Chronic pain in OIMEDICAL

Survey about pain & OI

The Spanish research foundation Fundación Ahuce has launched a new research project in collaboration with the University of Valencia. The OIFE encourages as many people with OI as possible to take part – even if chronic pain is an issue for you or not. People from all countries can participate as long as they can…

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ERN Bond group photoCONFERENCES

News from ERN-BOND

On the occasion of Rare Disease Day (February 28th) the European Reference Network for Rare Bone Disorders (ERN-BOND) organized a European Parliamentary Meeting called: European Reference Networks – Accelerating and Improving Diagnosis for Rare Diseases Patients. The meeting was kindly hosted by MEP Elena Gentile (S&D, IT) with support from EURORDIS. The OIFE was represented at…

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