by Jacqueline van der Blom | Jul 7, 2025 | Publication
Background Melorheostosis is a rare skeletal and connective tissue disorder with an estimated prevalence of approximately 1 per 1,100,000 individuals. Due to its rarity, clinical knowledge, natural history, and understanding of disease progression remain limited. A...
by Jacqueline van der Blom | Jul 7, 2025 | General
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 | General
EuRREB is proud to share the latest outcome of an international collaboration to improve research and care for patients with rare bone diseases. A new paper has been published describing the development of a core dataset for natural history studies in Fibrous...
by Jacqueline van der Blom | May 8, 2025 | General
We are excited to announce that the Langerhans Cell Histiocytosis (LCH) module is now live on the Core Registry platform! This condition-specific module activates automatically once a patient with LCH is entered into the system – making data collection seamless...
by Jacqueline van der Blom | May 8, 2025 | Publication
Background Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and complex disorder caused by postzygotic variants affecting the GNAS gene. The clinical presentation is highly variable, ranging from isolated bone involvement to multisystem disease with...
