ERN BOND - European Reference Network on Rare Bone Diseases

ERN-BOND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. The main ambition of the BOND ERN is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBD), supporting them in the full realisation of their fundamental human rights. In particular, BOND ERN aim to ensure that people living with a RBD are afforded the same standards of care and support as the ones available to other citizens with similar requirements. To meet this goal, BOND ERN gathers European professionals highly specialized in the field of RBD for both scientific research and multidisciplinary care to increase knowledge on RDs, to improve healthcare quality and patient safety, to increase access to ultra specialized medical expertise and accessible information beyond national borders, in accordance with Directive 2011/24/EU. ERN BOND aspiration is to support patients affected by rare bone diseases and their families, to increase their capacity to undertake a participative role in care provision, to set priorities and to participate in decisions regarding their care plan and their life project, in accordance with EUCERD recommendations (2013). BOND ERN aims to assess patients and families accessibility to and appropriateness of healthcare and social services. At the same time, the Network seeks to evaluate healthcare, social effectiveness, cost-effectiveness of actions implemented, measuring their impact on the quality of life of people living with RD.