by Jacqueline van der Blom | Dec 1, 2025 | General
We are excited to announce that the Chronic Non-bacterial Osteitis (CNO) module is now live on the Core Registry platform! This condition-specific module activates automatically once a patient with CNO is entered into the system – making data collection seamless...
by Jacqueline van der Blom | Nov 28, 2025 | General
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...
by Jacqueline van der Blom | Nov 6, 2025 | General
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...
by Jacqueline van der Blom | Oct 28, 2025 | General
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 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...
