Ombudsman announces Award for Good Administration winners

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

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Symposium on the Calcium Sensing Receptor (CaSR)

The 3rd international symposium on the Calcium Sensing Receptor (CaSR) will take place from May 11th to May 13th in Florance, Italy.

The symposium will bring together basic, translational and clinical scientists from different disciplines who study the molecular biology, physiology, and pathophysiology of the CaSR and clinical disorders of CaSR function. Continue reading

3rd DSDnet Training School 2017

The 3rd DSDnet Training School will take place from September 28th to September 30th in Budapest, Hungary as a postgraduate level course. The DSDnet Training School 2017 is under the topic: “Promoting Research in DSD”.

The Training School is aimed at Professionals from COST Countries in their early stages of career, from a medical or a scientific background. Continue reading

Newsletter April 2017: The first General Assembly

The European Reference Networks for rare and complex diseases (ERNs) were officially installed on 9 March 2017 at the 3rd conference on Rare diseases in Vilnius, Lithuania. The first General Assembly (GA) of the European Reference Network on Rare Endocrine Conditions (Endo-ERN) was held on Monday 27 March 2017, in Leiden, The Netherlands.

The purpose of this first annual meeting was first to inform and update all members and other stakeholders on the mission, structure, and governance of Endo-ERN, and subsequently to approve the current application by the members via voting in order to be officially operational, and finally to attain contribution of each Health Care Provider (HCP) to the pre-defined deliverables, as specified in the grant application. Continue reading

Official start of ERN’s in Vilnius, Lithuania

On March 9th 2017, all ERNs have officially been launched by the European Commission. This great celebration was organized by the ERN team of the European Commission DG SANTE.

On March 10th, Endo-ERN held its Steering Committee / Kick-off meeting to discuss our governance, multi-annual action plan and action plan for YEAR 1 with chairs of the Main Thematic Groups and Work Packages and Patient representatives. We thank all attendees for their participation and enthusiastic involvement.

Endo-ERN is very proud that we can now officially start working on our planned projects in order to deliver expert multidisciplinary care throughout life and to improve patient care in Rare Endocrine Conditions in Europe.

Read all the outcomes of the 3rd official European Reference Network (ERN) conference, including video and presentations.

This entry was posted in General.

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.

Continue reading

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