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.
Work Packages
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).
European Academy of Pediatrics Spring Meeting
On May 18-19th, 2018, the European Academy of Pediatrics Spring Meeting was held in Sofia, Bulgaria as part of the initiatives during the Bulgarian Presidency of the Council of the European Union. Endo-ERN was represented at this meeting and discussed potential future collaboration options.
Rare Disease Registries Kick-off
EuRRECa was present at the Rare Disease Registries Projects kick-off meeting in Luxembourg on 17th April.
Newsletter October 2017
Read the Endo-ERN Newsletter October 2017 now for information on events, meetings, and much more.
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.