Come and find us @ECE 2022:

24 May 2022 12:20 – 12:30 OC12.1 European Registries for Rare Endocrine Conditions (EuRRECa): the Use of a Core Registry for Collecting Common Data Elements and Clinician and Patient Reported Outcomes

EP154 Clinical Outcomes of COVID-19 Infection in Rare Bone and Mineral Disorders

P400 European Registries for Rare Endocrine Conditions (EuRRECa): Results from the Core Registry on Hypothalamic and Pituitary Conditions

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

Go to our news page for more information or join here

---