On November 17th, 2017, Erasmus MC, Rotterdam hosted an ERN info day on ‚the role of hospital managers in shaping the future of ERNs’. Alberto Pereira (Endo-ERN Coordinator), Willy Spaan (LUMC CEO), and Enrique Terol (DG SANTE) were present. Kontynuuj czytanie
On Monday November 20th, 2017 the first version of the Clinical Patient Management System (CPMS) went live. Kontynuuj czytanie
International fund raising for congenital adrenal hyperplasia (IFCAH) is a private fund, aimed to promote research on Congenital Adrenal Hyperplasia (CAH). Kontynuuj czytanie
The EU public consultation survey on transformation health and care in the digital single market is open until the 12th of October 2017. The purpose of this consultation is to define the need and scope of policy measures that will promote digital innovation in improving people’s health, and address systemic challenges to health and care systems. Kontynuuj czytanie
After the definite approval from Eurordis in August, Endo-ERN has added 5 new patient representatives to the team.
If you are interested in becoming a patient representative, check out our How to become an ePAG web page!
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The Endo-ERN August 2017 newsletter covering the activities of Endo-ERN for the past months is now available!
After only 5 months of being operational the European Reference Network on rare Endocrine conditions (Endo-ERN) has made a lot of progress. These months have been directed at deciding a specific strategy for active recruitment of engaged members. This was initiated at the first General Assembly in March 2017 by the sign up lists of interested members in work packages and this has continued since then. The Main Thematic Group (MTG) chairs and the Work Package (WP) chairs have steered the identification of leads to complete the first year deliverables.
Click on the link below to read more!
The second Endo-ERN general assembly will be held in Lübeck, Germany on Thursday the 22nd of February, 2018!
Last year the LUMC in Leiden hosted the general assembly. This year Universitätsklinikum Schleswig-Holstein in Lübeck, will be the host. All 71 RCs part of Endo-ERN will be represented at this General Assembly.
More details on the programme will follow later.
The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. The 24 established networks are now developing their joint activities on rare and complex diseases. Once this structure has been put into place the opportunity is expected to arise to create more ERNs and for RCs to join existing ERNs.
Any updates regarding a future call for both ERNs and RCs will be posted on DG Sante ERN and on the Endo-ERN website.
The Twitter page for Endo-ERN is online.
Follow the page to stay updated on news regarding ERNs, Endo-ERN, Paediatric and Adult Endocrinology, meetings and workshops, and much more.
After a successful launch of the European Reference Networks earlier this year, the 24 established networks are now developing their joint activities on rare and complex diseases. The added value for patients and their families will become visible in the coming months.
To illustrate the potential of the ERNs the European Commission has produced four video reportages, with real-life case studies: of an Italian patient with bone disorders, a Dutch heart patient, a Spanish girl who underwent a transplantation and a French representative of kidney patients. Telling their personal stories, we can show different aspects of the ERNs. A fifth, longer video reportage, brings the full story of the European Reference Networks, with the views of doctors, patients and European Commissioner Vytenis Andriukaitis.