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
EU Health Summit
On November 29th, 2019, the EU Health summit will be held in Brussels, Belgium. Continue reading
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’. Continue reading
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
Quality of Care Standard for Adrenal Disorders
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. Continue reading
Master course on DSD
On the 29th and 30th of November, 2018, Karolinska Institutet and the European Society for Paediatric Urology are hosting a master course on DSD in Stockholm, Sweden.
The programme will consist of lectures and case presentations by delegates. Registration is possible via email to marie.nurmi-johannesen@sll.se
Workshop summary
| Workshop | Master course on DSD |
| Date | November 29th - November 30th, 2018 |
| Location | Stockholm, Sweden |
| Organisation | Karolinska Institutet |
| Website | Visit workshop website |
| Programme | Download |