EuRR-Bone (European Registry for Rare Bone and Mineral Conditions) project’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).
EuRR-Bone will cover rare bone and mineral conditions, diseases covered by both Endo-ERN, the European Reference Network on Rare Endocrine Conditions as well as ERN BOND. EuRR-Bone will be of service to all 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 and 5 Vertical Themes: one focuses on Integration of EuRR-Bone and the others on specific diseases: Fibrous Dysplasia/McCune Albright Syndrome, X-linked Hypophosphatemic Rickets, Osteogenesis Imperfecta and Achondroplasia.
The EuRR-Bone project is funded by the European Union’s Health Programme.