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.
General
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.
ESPE2018
Endo-ERN was present at the European Society of Paediatric Endocrinology Meeting 2018. For the whole duration of the meeting we had a stand together with EuRRECa and there was a special Endo-ERN symposium.
Newsletter Summer 2018
Read the summer edition of the Endo-ERN newsletter now! The issue contains new information about Endo-ERN & EuRRECa at the ESPE2018 meeting, an update on the Clinical Patient Management System, and the first guidelines & consensus papers endorsed by Endo-ERN.
IFCAH Call October 2018
The international fund Congenital Adrenal Hyperplasia (IFCAH) is opening a call for proposals in October 2018!
RD-Connect: an international platform for rare disease data analysis and data sharing
All ERN members are invited to join RD-Connect!
RD-Conntect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. It provides user-friendly tools for data analysis and links different data types – omics (e.g. genomics), clinical information, patient registries and biobanks – into a common resource.
Newsletter May 2018
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!
Care for Pituitary Adenoma course
The 2nd workshop for multidisciplinary teams caring for pituitary tumours, CAPITAL, was held on June 7 and 8, in Leiden, The Netherlands and was a big succes.
Fourth Italian Endo-ERN meeting
The fourth Italian Endo-ERN meeting took place on the 7th of June, in Padova, Italy. The aim of the meeting, organised by the Italian national coordinators, was to bring together Italian and European Main Thematic Group coordinators, and the Italian European Advocacy Group.
