What is EuRR-Bone?

Expert centers for rare bone and mineral conditions and patient representatives  have joined their forces and started the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in April 2020. This project works closely with the European Registries for Rare Endocrine Conditions project (EURRECa) and the European Reference Networks for Rare Bone and Rare Endocrine conditions and includes:

• An e-reporting program (e-REC) that captures new clinical encounters
• A centralised Core registry
  • Disease-specific modules on Achondroplasia, Fibrous Dysplasia/McCune Albright syndrome, Osteogenesis Imperfecta and Rare Hypophosphatemia

Drop in sessions via ZOOM

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