Highlights from the VASCERN Days 2024

The much anticipated VASCERN Days 2024 took place on 24th and 25th October 2024 bringing together VASCERN members, patient advocates, and invited guests. Held at the Novotel CDG Convention, the event was a platform for collaboration, sharing, and strategic planning to improve care for patients with rare vascular diseases across Europe. Over two days, participants engaged in discussions, workshops, and networking events, with the goal of strengthening partnerships and advancing the field of rare disease care.

Day 1: Collaboration and Key Updates

The first day of VASCERN Days 2024 began with welcoming words from VASCERN Coordinator, Prof. Guillaume Jondeau, VASCERN Project Manager, Julie Hallac, and VASCERN Communication Project Officer, Treasure Udechukwu who provided an overview of VASCERN’s progress over the past year, including updates on new projects, training initiatives and communication strategies.

The morning sessions also featured:

• Updates on VASCERN’s latest developments: VASCERN Science & Education Project Officers Gloria Somalo & Roberta Armignacco spoke about new training programmes. Followed by further updates by Prof. Leo Schultze Kool, Prof. Guillaume Jondeau and Julie Hallac on the Clinical Patient Management System (CPMS) 2.0, new European initiatives such as Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN) project and European Rare Diseases Research Alliance (ERDERA), updated VASCERN terms of reference, and VASCERN extension with developing partners.
• Updates from the Transversal Working Groups (WGs), which focus on essential aspects of patient care that cut across different conditions:
  • The Pregnancy WG, led by Dr. Dorte Gulbrand Nielsen, discussed ongoing projects to manage pregnancy risks in women with rare vascular conditions.
  • The Psychology WG, presented by Anne-Mette Bredahl, emphasised the importance of mental health support for patients and their families, stressing that psychological care is a vital part of holistic treatment.
  • The Registries WG, led by VASCERN Data Steward, Pim Kamerling, focused on the progress of the set up and implementation of the patient registries across the network.
• Updates from the European Patient Advocacy Group (ePAG): Led by one of the ePAG co-chairs, Manuela Lourenco Marques, she presented new members of the group and projects by the group in the past year while emphasizing the crucial involvement in all of VASCERN’s work.

The morning finished with Rare Disease Working Group (RDWG) Chair presentations, a moment for each group to showcase their achievements and ongoing projects. From Hereditary Hemorrhagic Telangiectasia (HHT) to Vascular Anomalies (VASCA), the presentations painted a picture of progress fueled by dedicated teams working across borders.

Afternoon Sessions and Networking at Royaumont Abbaye

In the afternoon, participants joined Transversal WG parallel sessions that focused on transversal topics:

• The Psychology WG (chaired by Anne-Mette Bredahl) exploring ways to provide comprehensive psychological support to rare vascular disease patients.
• The Pregnancy WG (chaired by Dr. Dorte Gulbrand Nielsen) discussed best practices for managing pregnancy in patients with rare vascular diseases.
• The Communication WG, led by Treasure Udechukwu, aimed at enhancing outreach and information dissemination.
• The Education WG, headed by Prof. Guillaume Jondeau, highlighted training programmes aimed at equipping clinicians with essential knowledge and skills.

The RDWG parallel sessions later in the day allowed experts to delve deeper into their specialist areas, discussing the latest research, ongoing projects and planning future collaborations.

The day concluded with a memorable networking event at the beautiful Royaumont Abbaye. This historic setting was the perfect backdrop for participants to connect, share ideas, and build new partnerships. The evening embodied the collaborative spirit of VASCERN, with experts and advocates alike exchanging insights and experiences.

Day 2: Practical Insights and Patient-Centred Strategies

Day 2 of VASCERN Days 2024 focused on putting insights into practice. The morning began with collaborative case discussions where experts consulted on complex patient cases, sharing their knowledge to improve treatment outcomes. These sessions demonstrated how the network’s collaborative model brings tangible benefits to patients, fostering real-time exchanges of expertise and insights.

The ePAG session brought together patient representatives to review their progress over the past year. The session provided an opportunity to discuss new strategies for the coming months, identify areas for improvement, and reinforce the importance of patient-centred approaches. This discussion was a powerful reminder that patient engagement drives the network’s initiatives, ensuring that patient voices guide the development of care strategies and projects.

Throughout the day, the RDWG parallel sessions continued, allowing teams to share updates on their latest research, discuss challenges, and refine their strategies for advancing care. The collaborative energy was clear, with participants eager to build on each other’s ideas, reflecting VASCERN’s belief that collective knowledge can drive real change.

Key Themes and Takeaways

As VASCERN Days 2024 came to a close, a few key themes stood out:

• Collaboration Across Borders: From structured presentations to informal networking, the event highlighted the importance of working together across countries and disciplines. VASCERN’s strength lies in its ability to bring together diverse expertise to tackle complex challenges, particularly through collaborative case discussions that encourage real-time knowledge exchange.
• Empowering Patients: The involvement of patient representatives was a highlight, underscoring the importance of listening to patients. Their insights reminded everyone that effective care begins with understanding the patient experience, and that advocacy plays a crucial role in driving meaningful change.
• Practical Application of Expertise: The regular case discussions demonstrated how sharing expertise can lead to better treatment outcomes. By working through complex cases together, experts could offer fresh perspectives, share best practices, and develop more effective care strategies for rare vascular disease patients.