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!
EU Health Summit
On November 29th, 2018, the EU Health summit will be held in Brussels, Belgium.
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.
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
ENEA Workshop
From 5 until 7 December 2019, the sixth ENEA Workshop on ParaSellar Lesions will take place in Athens, Greece.
The European NeuroEndocrine Association is hosting the sixth workshop on ParaSellar Lesions. The online abstract submission opens on 25 January and Early bird registration is available until September 15th, 2019.
Preliminary details on the programme will become available in December, 2018.
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).
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.
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).
Successful Audit
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.
CPMS webinar
On October 16th from 14:00-15:00 CET, the ERN IT support will host a CPMS Webinar via WebEx, with the topic: ‘CPMS for new users: Authorisation- Authentication- First login’.
