by Jacqueline van der Blom | Oct 6, 2025 | Publication
New EuRREB Publication: Gender Incongruence Module We are pleased to share the publication of a new EuRREB article: “The Gender Incongruence module in the European Registries for Rare Endocrine & Bone Conditions (EuRREB): first results, current insights and...by Jacqueline van der Blom | Jul 7, 2025 | Publication
Developing a standard dataset in the European registries for rare endocrine and bone conditions – a Melorheostosis dataset We are pleased to share the publication of a new EuRREB article: “Developing a standard dataset in the European registries for rare endocrine and...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
Venous thromboembolism in Cushing syndrome: results from an EuRRECa and Endo-ERN survey 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...by sabine | Mar 16, 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 | 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...