European Reference Network on BONe rare Diseases

ended

The ERN BOND brings together all rare diseases, essentially congenital, chronic and of genetic origin, that affect cartilage, bones and dentin. This large field may be shared in two main categories, skeletal dysplasia and metabolic bone diseases. These 2 categories themselves are subdivided in several thematic and sub thematic groups. 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 aims 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. BOND ERN 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.