RESEARCH

New PhD: Extra skeletal complications in OI

New PhD in OI – Extra skeletal complications in OI Interview with Silvia Storoni Who are you & what is your relationship to OI? I am Silvia Storoni, a physician specializing in internal medicine with a particular interest in endocrinology. A few years ago, I came in contact with Dr. Marelise Eekhoff and Dr. Dimitra…

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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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