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.
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’.
The Italian National Centre for Rare Diseases, Istituto Superiore di Sanità, recently published the article ‘Art and Science’ in the Journal Lancet Neurology
The EU released a new animation video on ERNs
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.
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.
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.
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!
On November 29th, 2018, the EU Health summit will be held in Brussels, Belgium.
Over the past three years a quality of care standard for adrenal disorders has been developed and was recently listed in the Register of the Dutch National Health Care Institute in September 2018. The standard was initiated by the consortium AdrenalNet and was developed in cooperation with both patients and healthcare professionals.
