by Jacqueline van der Blom | Jul 7, 2025 | Publication
We are pleased to share the publication of a new EuRREB article: “Developing a standard dataset in the European registries for rare endocrine and bone conditions – a Melorheostosis dataset”, now available in the Orphanet Journal of Rare Diseases on July 1, 2025....by Jacqueline van der Blom | May 8, 2025 | Publication
Background Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and complex condition caused by somatic variants in the GNAS gene, leading to a wide clinical spectrum. The diagnostic process and therapeutic pathways vary across centers, highlighting the need...by sabine | Jul 1, 2024 | Publication
Background: Patients with Cushing syndrome (CS) are at increased risk of venous thromboembolism (VTE). Objective: To evaluate current management of new cases of CS with a focus on VTE and thromboprophylaxis. Design and Methods: A survey was conducted within those that...by sabine | Mar 16, 2024 | Publication
Abstract Rare diseases (RDs) bear a significant challenge to individuals, healthcare systems, and societies. The European reference network on Rare BONe diseases (ERN BOND) is committed to improving multidisciplinary, patient-centred care for individuals with rare...by sabine | Jul 1, 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 | Jun 1, 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...Our Registries Symposium will take place on Friday 12 September 10:00-14:00 CEST at the Academy Building (Telders Auditorium) in Leiden, the Netherlands. Read more