Newsletter August 2017

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!

General Assembly 2018

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 HCPs part of Endo-ERN will be represented at this General Assembly.

More details on the programme will follow later.

EU public consultation survey on digital single market

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 consultation collects views on:

  • Cross-border access to and management of personal health data;
  • A joint European exploitation of resources (digital infrastructure, data capacity), to accelerate research and to advance prevention, treatment and personalised medicine;
  • Measures for widespread uptake of digital innovation, supporting citizen feedback and interaction between patients and health care providers.

Digital data sharing is of vital importance to all cross-border healthcare initiatives, such as Endo-ERN.


Video reportages European Reference Networks

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.

Watch the videos

3rd European Reference Networks Conference

The European Commission organizes the 3rd European Reference Networks Conference in Vilnius on March, 9–10th 2017. This event will be the official launch and start of the first labeled European Reference Networks (see here the list of approved ERNs).

The conference (live webstream will be available here) on 9th will tackle topics such as:

  • Coordination, management & governance of ERNs;
  • ERN IT platform as core element for eHealth, telemedicine, sharing of expertise in complex clinical cases;
  • EU policies and support to ENRs (research, registry platform, rare diseases policy…);
  • ERN and national healthcare systems;
  • The way forward with perspectives of Healthcare providers, patient representatives, ERN Coordinators, Member States.

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