RD-Action published a report on the conclusions and next steps from the workshop ‘How ERNs can provide added value in the area of clinical research’. Continue reading
Report on RD-Action workshop
General
Article “Art and Science” published in Lancet Neurology
The Italian National Centre for Rare Diseases, Istituto Superiore di Sanità, recently published the article ‘Art and Science’ in the Journal Lancet Neurology Continue reading
Animation Video ERNs
The EU released a new animation video on ERNs Continue reading
Endo-ERN was present at the 4th ERN Conference
Endo-ERN was present at the 4th ERN Conference on 21 and 22 November in Brussels, Belgium! We were present with ten delegates from five different countries. Both adult and paediatric endocrine experts, as well as patient representatives, attended the event. The lively conference featured two full days of presentations and debates, driven by plenary sessions and eight parallel workshops. Continue reading
4th Conference on European Reference Networks
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. Continue reading
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. Continue reading
October Newsletter
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! Continue reading
Dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia
In October 2018, Christiaan F. Mooij pubished a dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia (CAH). Continue reading
Newsletter September 2018
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. Continue reading
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). Continue reading