Latest
News
New Module Launch: Women’s Reproductive Health
We are excited to announce that the Women’s Reproductive Health module is now live on the Core Registry platform! The module was launched in April 2026 and is the work of the Pregnancy Working Group. Once a patient with any condition is entered into the Core Registry,...
New Module Launch: Hypoparathyroidism
We are excited to announce that the Hypoparathyroidism module is now live on the Core Registry platform! This condition-specific module activates automatically once a patient with Hypoparathyroidism is entered into the system – making data collection seamless and...
Assigning PROMs to patients (for clinicians only)
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...
January Newsletter
Want to stay updated with the latest EuRREB news? Read our January Newsletter. You can also subscribe to receive our updates twice a year – in January and June!
New EuRREB publication! Feasibility of transition research in pituitary disease using patient registries: a EuRREB secondary survey
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...
New Module Launch: Multiple Endocrine Neoplasia type 1 (MEN-1)
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...
New Module Launch: Chronic Non-bacterial Osteitis (CNO)
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...
SUCCESS: Endo-ERN Shows Strong Performance in First ERN Monitoring Report
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...
HAVE YOUR SAY: Keep rare diseases on Europe’s health agenda
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...
New EuRREB publication! Gender Incongruence Module
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...