On the 12th of March, 2019, the 3rd Endo-ERN General Assembly took place in Budapest, Hungary. More than 100 members, including member reference centres, patient representatives, national coordinators, representatives of ESPE and ESE, and affiliated partners, participated in the meeting that lasted from 10:45 to 16:30.
The purpose of the annual General Assembly is to update all members and to discuss and approve via plenary voting on the work and progress of the network in the past year and the future plans. The agenda consisted of presentations from both the adult and the paediatric chairs of Endo-ERN, the different Work Packages (WPs) and Main Thematic Groups (MTGs) chairs, the European Patient Advocacy Groups representative (ePAG representative), and the Endo-ERN CPMS helpdesk.
The meeting was opened at 10:45 by the Vice President of the Clinical Centre Semmelweis University, Prof. Nándor Ács. The morning agenda continued with a presentation on the update of year two and the plans for years 3-5, presented by the adult chair, Alberto Pereira. Next, Danielle Steenvoorden (adult CPMS helpdesk staff) presented the Clinical Patient Management System, explaining the milestones already reached and the potential of the system if everyone starts using it. Danielle was also available for CPMS questions during special hours allocated for this purpose,
one hour before, and one hour after the meeting. Paediatric chair Olaf Hiort continued the morning session presenting information on the second ERN call for full members and designation process for Affiliated Partners, followed by a second presentation by Alberto Pereira on the monitoring and performance of ERNs and its centres. The morning presentations were concluded by Marika Porrey, providing an update from the continuously evolving Endo-ERN ePAG, and their struggles and accomplishments.
After the lunch break the meeting continued with the presentations from the different Work Package (WPs) and Main Thematic Group (MTGs) chairs, in which each WP and each MTG presented an update on their work and plans.
This year’s meeting was once again a great success and we would like to thank everyone who attended.
All presentations can be found on the Collaborative Platform.
For more photos, have a look on our Facebook page!
