by sabine | Jul 26, 2024 | Publication
Background Rare bone and mineral diseases are characterised by limited available evidence, small patient populations, and a need for specialised multidisciplinary care. European Reference Networks (ERNs) provide a framework to improve collaboration between expert...by sabine | May 7, 2024 | Publication
Background Patients with Cushing syndrome (CS) have an increased risk of venous thromboembolism (VTE). However, evidence regarding the occurrence of VTE and current thromboprophylaxis strategies in patients with CS remains limited due to the rarity of the condition...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...