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 centralized Core registry
  • Disease-specific modules on Achondroplasia, Fibrous Dysplasia/McCune Albright syndrome, Osteogenesis Imperfecta , Rare Hypophosphatemia, Melorheostosis and Parathyroid carcinoma.

Upcoming Events

The first joint EuRRECa / EuRR-Bone symposium will take place on 3 April 2023 from 10.00 to 14.00 CET at the Academy building in Leiden, the Netherlands. Registration for the symposium is closed. If you still want to register, please contact registries@lumc.nl

Drop in sessions via ZOOM

Join here

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