Successful ERNPaedCan General Assembly
(Vienna, 30.06.2023) The St. Anna CCRI team, in collaboration with SIOPE, successfully coordinated this year’s General Assembly for the ERN PaedCan project, marking five years of significant achievements. The assembly functioned as platform to celebrate the progress made and to examine the benefits delivered to patients through the network’s activities. The event witnessed participation from over 100 individuals representing more than 90 ERN PaedCan members, highlighting its exceptional impact.
During the first day of the conference, participants engaged in comprehensive discussions on the challenges and successes experienced over the past five years. The discussions also extended to the future, outlining plans for the upcoming project period. Key topics included the vital role of communication with patients, the promotion of educational and exchange initiatives, and the integration of advanced digital tools such as CPMS and Virtual Tumor Boards. Furthermore, there was a collective effort to identify strategies for broadening the dissemination of ERN-related activities to various communities.
The second day offered crucial updates on European projects pertinent to the ERN PaedCan community, delving into significant policy developments within the European Union and exploring Orphanet’s activities concerning rare diseases. Ruth Ladenstein, the Head of Studies and Statistics and Integrated Projects (S²IRP) Unit at St. Anna CCRI, provided an insightful session on the concluding day. She emphasized the PaedCan topics that warrant discussion with the European Commission, guiding the focus for future dialogues.
The event’s success was amplified by the enthusiastic participation and invaluable contributions of all attendees. The St. Anna CCRI team appreciates the continued involvement and support from the ERN PaedCan community and looks forward to sharing further developments and achievements as the project advances.