Do you know how to assign PROMs to your patients in the EuRREB Core Registry? Within the Core Registry, questionnaires are not sent automatically. As a clinician you need to assign them directly to your patients within the platform. To enable patients to complete...

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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...

We are excited to announce that the Multiple Endocrine Neoplasia type 1 (MEN-1) module is now live on the Core Registry platform! This condition-specific module activates automatically once a patient with MEN1 is entered into the system - making data collection...

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 and...

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...

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...

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...