EuRR-Bone is the European Registry for Rare Bone and Mineral Conditions. EuRR-Bone’s project aims to create a high-quality, patient-centered registry for rare bone and mineral conditions in collaboration with EuRRECa (European Registries for Rare Endocrine Conditions).
EuRR-Bone focuses on rare bone and mineral conditions, diseases covered both by Endo-ERN and ERN BOND. EuRR-Bone will be at disposal of patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.
The project has been officially launched in April 2020 and it is organised in 5 Work Packages on project activities and 5 Vertical Themes (one focuses on integration of EuRR-Bone with EuRRECa and the others on specific diseases: Fibrous Dysplasia/McCune Albright Syndrome, X-linked Hypophosphatemic Rickets, Osteogenesis Imperfecta and Achondroplasia).