by Jacqueline van der Blom | Dec 3, 2025 | Publication
We are pleased to share our latest publication: “Feasibility of transition research in pituitary disease using joint adult–paediatric endocrinology care”, available in the Endocrine Connections on December 2, 2025. Read the full publication here Why is this...by Jacqueline van der Blom | Oct 6, 2025 | Publication
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 future directions” now available in Endocrine...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. Read...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
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 | 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...