by sabine | Jul 26, 2024 | Publication
The Role of the European Reference Network for Rare Bone Diseases (ERN BOND) and European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in the Governance of the Management of Rare Bone and Mineral Diseases Abstract Rare diseases (RDs) bear a significant...by sabine | May 7, 2024 | Publication
We are pleased to share our latest publication: “Venous thromboembolism in Cushing syndrome: results from an EuRRECa and Endo-ERN survey”, available in the Endocrine Connections on April 1, 2024. Read the full publication here Background Patients with Cushing...by sabine | Dec 1, 2023 | Publication
Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases Read publication Overview publication Title Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases Date December...by sabine | Nov 20, 2023 | Publication
Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of...by sabine | Mar 10, 2023 | Publication
Background Information on clinical outcomes of coronavirus disease 19 (COVID-19) infection in patients with adrenal disorders is scarce. Methods A collaboration between the European Society of Endocrinology (ESE) Rare Disease Committee and European Reference Network...