The current landscape of European registries for rare endocrine conditions

On behalf of Endo-ERN the publication on ‘The current landscape of European registries for rare endocrine conditions’ was recently posted in the European Journal of Endocrinology. The objective was to identify international registries led from Europe for rare endocrine conditions and to understand the extent of engagement with these registries within Endo-ERN.

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6th International Summer School on Rare Disease and Orphan Drug Registries

The 6th International Summer School on Rare Disease and Orphan Drug Registries took place from September 10 to September 14, 2018, in Rome, Italy. The course was addressed to professionals and patients involved in, or planning, the establishment of a rare disease registry, particularly within the European Reference Networks (ERNs).

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Steering Committee & Advisory Board meeting 9 October

On the 9th of October, 2017, Endo-ERN held its 3rd Steering Committee & Advisory Board meeting. This meeting took place in the LUMC, Leiden, The Netherlands. Most Main Thematic Group (MTG) chairs and Work Package (WP) chairs, all ePAGs, the national coordinator of France and The Netherlands, and the ESPE representative attended.

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