RESEARCH

Breathe, Eat, Sleep & Test!

OIers are frequently recommended to lose weight, but no indications or information on the nutritional status in OI are provided. Patients and families, therefore, end up with following a “do-it-yourself” diet, sometimes eating a lot of dairy products with the wrong idea to strengthen the bones and reduce the fractures incidence. Interview with Antonella Lo…

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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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