by sabine | Dec 1, 2023 | Publication
Background Knowledge on the natural history of rare diseases is necessary to improve outcomes. Disease registries may play a key role in covering these unmet needs in the rare bone and mineral community. Objective To map existing bone and mineral conditions registries...by sabine | Nov 20, 2023 | Publication
Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of conditions within the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN). The aim 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...by sabine | Feb 3, 2023 | Publication
Background Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment...by sabine | Jul 2, 2022 | Publication
Abstract A pre-meeting workshop on spinal complications in children and adults with achondroplasia was held in Dublin, Ireland at the 10th International Conference on Children’s Bone Health (ICCBH) (2–5 July 2022). The pathophysiology, natural history and...by sabine | May 1, 2022 | Publication
Background The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) is closely linked to the European Reference Networks on Rare Bone Diseases (ERN BOND) and Rare Endocrine Conditions (Endo-ERN) and with its registry EuRRECa. It is however open to all...