The European Commission accepted our proposal on the call for projects aiming to support the development and creation of registries for rare diseases in Europe. We can now start to create EuRR-Bone – European Registry for Rare Bone and Mineral Conditions – based on the experience of Endo-ERN with its registry EuRRECa.
Why is this so important?
In the field of rare diseases data are few, scattered and difficult to capture. A registry gives researchers access to valuable and standardised information to both support and develop new precious researches and activities. EuRR-Bone will then contribute to improve the care and the treatment of patients affected by rare bone and mineral conditions.
Share. Care. Cure.
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 (RBDs), supporting them in the full realization 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).