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October 16 2023

Reflecting on VASCERN Days 2023: Two days of collaboration & knowledge exchange


VASCERN Days 2023 was a two-day event that brought together a passionate and dedicated community of experts, patients, advocates, and stakeholders in the field of rare vascular diseases. Held on October 5-6, this annual seminar provided a platform for knowledge sharing, collaboration, and the exchange of groundbreaking ideas. Let’s take a closer look at the highlights of this remarkable event.

The first day of VASCERN Days 2023 began with the excitement of doors opening and registration. This set the tone for what was to come. The VASCERN Annual Board meeting, led by VASCERN Coordinator Prof. Guillaume Jondeau and Project Manager Julie Hallac, provided a comprehensive overview of VASCERN’s ongoing initiatives.

Day 1 featured discussions on critical topics, including VASCERN’s management and coordination, the new EU grant application, communication strategies, and information dissemination. Attendees gained insight into various network developments, such as training initiatives like the upcoming VASCERN Summer School and IT advancements like the new CPMS. Additionally, there was a look at the evaluation process with input from representatives of the European Health and Digital Executive Agency (HADEA) and the Directorate-General for Health and Food Safety (DG SANTE), as well as expansion into new countries, including Ukraine. Prof. Leo Schultze Kool presented upcoming EU projects like JARDIN and ERDERA.

Eva Collado-González, Chair of the European Patient Advocacy Group (ePAG), emphasized the invaluable contributions of ePAG, underlining their active involvement in all VASCERN projects across the network’s six rare disease working groups. She highlighted the paramount importance of the patient voice and introduced the new ePAG co-chairs. The day also featured presentations on the Transversal Working Groups, with Prof. Julie De Backer sharing exciting developments in the Pregnancy Working Group, including a Delphi study on drug use during pregnancy. Pim Kamerling, VASCERN Data Steward, provided insights into the progress made in developing patient registries, a crucial tool for understanding the complexities of rare vascular diseases.

A standout moment during the VASCERN Days was the inaugural meeting of the Psychology Working Group. This meeting brought together psychologists, patient advocates, and clinicians to discuss the importance of psychological support for both rare vascular disease patients and clinicians. The group aspires to develop valuable resources for these stakeholders in the future.

The first day ended with sessions dedicated to Rare Disease Working Groups, setting the tone for collaboration and in-depth discussions. Attendees also had time to network with a tour of the Comics Art Museum and enjoy a warm delicious meal together.

The second day of VASCERN Days 2023 continued the theme of collaboration and progress. It started with CPMS (Clinical Patient Management System) case discussions and an ePAG meeting where advocates outlined action plans for the upcoming months.

Rare Disease Working Group sessions allowed for in-depth discussions on work packages, demonstrating the network’s unwavering commitment to research and patient care. Inter-Rare Disease Working Group Sessions further promoted collaboration and knowledge sharing between groups, reinforcing the power of collective effort.

The seminar concluded with a comprehensive wrap-up, marking the end of two days filled with inspiration, knowledge exchange, and a shared vision for a brighter future in rare vascular diseases.

VASCERN Days 2023 was not just a seminar but a testament to the dedication and collaborative spirit of our members committed to improving the lives of people living with rare vascular diseases. The success of this seminar was a celebration of the progress made and the knowledge shared.

Stay tuned for future outcomes from VASCERN Days 2023.

Reflecting on VASCERN Days 2023: Two days of collaboration & knowledge exchange 14
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