European Reference Network on rare BONe Diseases 2022

ended

According to the ERN BOND ambition to increasingly implement patient-centered and participative care for people living with rare bone diseases (RBDs), the priority of this proposal will be given to integrating the new members and enlarging the number of European Patient Advocacy Group (ePAG) representatives. This inclusive approach also aims to focus attention on ultra-rare diseases, while still maintaining a broad-spectrum vision on all RBDs. If the BOND network initially focused its activities on three exemplar conditions, best practice methodology and systematic approaches will be replicated in many other conditions affecting the skeleton. As general objectives of the next period, innovations in medical science and health technologies will be used for realizing cooperative and highly specialized healthcare for RBD patients, as well as to share and disseminate RD knowledge; in particular, the next generation of healthcare professionals will be trained by the network with focused attention towards Member States with less expertise. Clinical practice guidelines and other clinical decision support tools will be developed to facilitate the improvement of both diagnosis and highly specialized surgery paying particular attention to the patients’ transition from pediatric to adult life, reported as not adequately treated. Finally, giving the preference expressed by patients for centralized care, also supported by the improvement of survival and quality of life when caring the rare conditions in centers of excellence, BOND will promote centralized (virtual) services, working in multi-disciplinary networks, and increasing the number of visited patients, all joined to improvement in data management tools and digital activities.