Mission

The main ambition of ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBDs), supporting them in the full realisation of their fundamental human rights. In particular, ERN BOND aims to ensure that people living with an RBD are afforded the same standards of care and support as the ones available to other citizens with similar requirements.

ERN BOND’s 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).

Vision

ERN BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis and treatment. ERN BOND will develop, together with the ePAGs, evidence/consensus-based guidelines to improve agreed outcomes staring from  3 exemplar conditions: Osteogenesis imperfecta, X-linked hypophosphatemia  and Achondroplasia, selected on the basis of their disease prevalence, severity, diagnostic and management difficulties, treatment availability, and novel emergent therapies.

ERN BOND will maintain a broad-spectrum vision on all RBDs, including ultra-rare bone disorders, replicating the outcomes obtained from the pilot conditions, and thereby leading to improvements in the quality and effectiveness of care in all RBDs.

We expect that reduced time to diagnosis with fewer inappropriate tests, more accurate diagnosis and new viable treatments will be available within the 2-3 years and that the visibility of expert teams will be a magnet for attracting complex cases with improved communication allowing many more to receive their care locally with support from their expert centres.

BOND works with patient representatives  in all activities to ensure patient-focused developments, with patient-reported outcome and experience measures to be adopted as specific outcomes against which to assess BOND performance in improving healthcare. BOND will be instrumental for collaboration across Europe for clinical trials with novel orphan drugs, coordinated supportive care measures and translation of current research into patient benefit, alongside development of new approaches such as targeted (epi)genome editing that may be of great potential especially for the rare bone diseases.