This week the proposal for the European Registries for Rare Endocrine Conditions (EuRRECa) was approved by the European Commission. Continue reading
European Registries for Rare Endocrine Conditions
ERN
CEF Telecom Application Submitted
On the 21st of September Endo-ERN applied for the 2017 CEF Telecom Call – eHealth (CEF-TC-2017-2). Continue reading
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 RCs part of Endo-ERN will be represented at this General Assembly.
More details on the programme will follow later.
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.
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.