New European Rare Bone Network
Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference.
The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘. Luca Sangiorgi from the European Reference Network for Rare Bone Disorders (ERN BOND) was also part of the brainstorming about what kind of purpose such a network should have.
Patient involvement in research & development and educational activites for patients, professionals and industry representatives were mentioned as some of the top priorities for future collaboration.