Central Registry for Ground-Breaking Rare Disease Research EuRREB

PATIENT MATERIALS

This article from HypoNIEUWS introduces the European Core Registry for rare endocrine conditions, developed by Endo-ERN and EuRRECa*. It explains how the registry collects standardized, pseudonymized data from patients across Europe to support research and improve care for rare diseases, with strong privacy protections and patient involvement.

*EuRRECa is now European Registires for Rare Endocrine and Bone Conditions

Note: Resource summaries and translations into relevant languages were produced with the assistance of ChatGPT.