Read the November edition of the Endo-ERN newsletter now! We report on the 4th ERN conference, update on the Clinical Patient Management System, and show a new video made by the EU commission on the functioning of the ERNs!
Care for Pituitary Adenoma Leiden
The third Care for Pituitary Adenoma Leiden (CAPITAL) workshop for pituitary tumour specialists will take place on 6 and 7 June, 2019, in Leiden, the Netherlands.
CPMS workshop for ERN experts
On December 6th we were at the CPMS workshop for ERN experts in Brussels, Belgium. The European Commission hosted this workshop to inform the employees of the operational help desks of the different ERNs of the functions of the CPMS and the best way to go about solving problems that might come up.
3rd Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies
The 3rd Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies, a EURORDIS initiative, will be held in Brussels, Belgium, on 13 and 14 February, 2019.
Report on RD-Action workshop
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’.
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
Animation Video ERNs
The EU released a new animation video on ERNs
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.
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.
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.
