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...
by Jacqueline van der Blom | Mar 13, 2025 | General
Call for abstracts is now open for the upcoming European Society for Paediatric Endocrinology (ESPE) and French rare diseases healthcare network (OSCAR) being held 18-19 September in Paris France. Late-breaking abstract submission deadline 27 April, 2025, 23:59 CET....
by Jacqueline van der Blom | Oct 17, 2024 | General
EuRREB is currently creating a module for endocrine and bone complications in Langerhans Cell Histiocytosis in collaboration with the ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases). Langerhans Cell Histiocytosis is a haematological...
