On Monday November 20th, 2017 the first version of the Clinical Patient Management System (CPMS) went live. Continue reading
International fund raising for congenital adrenal hyperplasia (IFCAH) is a private fund, aimed to promote research on Congenital Adrenal Hyperplasia (CAH).
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.
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.
- A call for Reference Centers to join existing networks is expected to be opened in the first semester of 2018.
- A call for new ERNs should be launched in the incoming years, but it is not expected before 2019.
Any updates regarding a future call for both ERNs and RCs will be posted on DG Sante ERN and on the Endo-ERN website.
Endo-ERN is now on Twitter
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.
The European Ombudsman, Emily O’Reilly, celebrated the range and quality of the nominations for the Award for Good Administration in a ceremony in Brussels on Thursday.
Launched in October, the Award attracted 90 nominated projects from the main EU institutions as well as many agencies and other bodies.
Prizes were awarded in 7 categories with the overall Award for Good Administration 2017 going to the Commission’s DG Health whose nominated unit developed EU collaboration in the sharing of vital information and expertise to help millions of Europeans suffering from rare diseases. Continue reading