On November 21 and 22 the 4th Conference on European Reference Networks will take place in Brussels, Belgium. 10-12 participants per network are invited to attend and Endo-ERN will be present with adult and paediatric endocrinologists, as well as patient representatives. Continuați să citiți
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. Continuați să citiți
Read the October edition of the Endo-ERN newsletter now! We announce our LinkedIn page, talk about our role in the EU ERN coordinators working group, and our translated flyers! Continuați să citiți
In October 2018, Christiaan F. Mooij pubished a dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia (CAH). Continuați să citiți
Read the September edition of the Endo-ERN newsletter now! This issue reports about our time at ESPE2018, gives an update on the Clinical Patient management system & the newly Operational Helpdesk, and the succesful audit of seven Endo-ERN centers. Continuați să citiți
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). Continuați să citiți
Seven Endo-ERN Reference centers were assessed during the audit last month and all seven passed! The audit consisted of seven documentation assessments and one on-site visit. Continuați să citiți
Endo-ERN was present at the European Society of Paediatric Endocrinology Meeting 2018. For the whole duration of the meeting we had a stand together with EuRRECa and there was a special Endo-ERN symposium. Continuați să citiți
Read the summer edition of the Endo-ERN newsletter now! The issue contains new information about Endo-ERN & EuRRECa at the ESPE2018 meeting, an update on the Clinical Patient Management System, and the first guidelines & consensus papers endorsed by Endo-ERN. Continuați să citiți
The international fund Congenital Adrenal Hyperplasia (IFCAH) is opening a call for proposals in October 2018! Continuați să citiți