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

WEBINAR: Getting to Know Rare Disease Registries on 22 March 2023 from 16.00 to 17.00 CET. You can REGISTER now. Want to know more about our webinar? Please read more.

Drop in sessions via ZOOM

Join here

---