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!
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.
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.
Read the Endo-ERN May newsletter now! In this edition we announce our presence at the European Society for Paediatric Endocrinology meeting, you can read reports on multiple meetings such as the CAPITAL meeting, and the CPMS WebEx Webinars hosted by our operational helpdesk!
Read the Endo-ERN April newsletter now! This edition contains the date for the Endo-ERN General Assembly 2019, more information about our stand at ECE2018, a video on CPMS, and much more!
The European Commission has released a video on how to get started with the Clinical Patient Management System (CPMS).
The European Commission has released a press release looking back on Rare Diseases day and celebrating the 1-year anniversary of ERNs
Read the Endo-ERN February newsletter now! This past month we held our second General Assembly, the ERN coordinators wrote a position statement on the state of the UK in ERNs, and we recieved information on a new audit coming from the European Commission. Read the complete newsletter to find out more.
On the 22nd of February, 2018, the second Endo-ERN General Assembly took place in Lübeck, Germany. Little under one hundred participants gathered in Lübeck for the General Assembly on the 22nd of February. Representatives of the Endo-ERN member Reference Centers, Patient Representatives, National Coordinators, representatives of ESE and ESPE, and other specifically interested persons attended.
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