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...

The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks (ERNs), covering the 2023–2024 reporting period. This milestone report compiles data from more than 1,600 clinical units across 375...

The European Commission has opened a consultation on the draft Multiannual Financial Framework (MFF) - the EU’s long-term budget plan. In the current proposal, rare diseases are not explicitly mentioned, and the EU4Health programme no longer appears as a standalone...

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...

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...

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...

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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...

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 and...