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).
Newsletter September 2018
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’.
4th Conference on European Reference Networks
On November 21 and 22 the 4th Conference on European Reference Networks will take place in Brussels, Belgium. Ten participants per network are invited to attend and Endo-ERN will be present with adult and paediatric endocrinologists, as well as patient representatives.
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.
RD-Connect Webinar: why should we make data FAIR
On Wednesday September 26th 15:00 CEST , Marco Roos from Leiden University Medical Center, The Netherlands, will host a webinar on Linking up all those data: why should we make data FAIR.
X-linked Hypophosphatemic Rickets (XLH)
The X-linked Hypophosphatemic Rickets (XLH) conference will take place on September 26, 2018, in Athens, Greece.
Congenital Hyperinsulinism International
The Congenital Hyperinsulinism International conference will take place on September 25 and 26, 2018, in Athens, Greece.
