European Reference Network on BONe rare Diseases

ended

The main ambition of the ERN BOND 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. To meet this goal, BOND 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. ERN BOND aspiration is to support patients affected by RBD 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. BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis, and treatment, in collaboration with Patients Representatives (ePAGs). Efforts to target less developed affiliate partners, where the gap between existing provision and that aspired to through BOND is largest, will be carried, meeting the target of improving healthcare in ALL Members States.