by Tess de Rooij | Sep 26, 2025 | General
On Friday 12 September 2025, the EuRREB community came together for a very successful Registries Symposium at the Lipsius Building in Leiden, the Netherlands. With more than 130 participants (70+ in person and 60 via livestream) from 28 countries, the event fostered...
by Jacqueline van der Blom | Sep 18, 2025 | General
Congratulations to Professor Natasha Appelman-Dijkstra, Professor of Internal Medicine in Bone and Mineral Disorders, on her inspiring inaugural lecture held on Friday 12 September. In her inaugural lecture As Long as the Quality is Assured, Professor Natasha...
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 | Jun 24, 2025 | General
Want to stay updated with the latest EuRREB news? Read our June Newsletter. You can also subscribe to receive our updates twice a year – in January and...
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...
