General News
31 October 2025
ERDERA to launch the 2026 Joint Transnational Call on rare diseases
There was a familiar sense of anticipation in the air as members of VASCERN arrived at the Novotel Convention Centre near Paris Charles de Gaulle for VASCERN Days 2025, held from 9–10 October. More than one hundred participants joined onsite and online for two days of collaboration, discussion, and shared learning focused on improving care for people living with rare multisystemic vascular diseases.
The hybrid meeting brought together healthcare professionals, patient advocates, researchers, and coordination team members from across Europe. Participants reconnected after months of online work, exchanging ideas and reflecting on the past year’s achievements while preparing for the initiatives ahead.
This year’s edition continued the tradition of structured sessions that embody VASCERN’s values of collaboration, learning, and shared progress.
Coordination and Network Updates
The meeting opened with welcoming words from Prof. Guillaume Jondeau (VASCERN Coordinator) and Julie Hallac (VASCERN Project Manager), who reflected on the network’s growth and cross-border collaboration. Their presentation outlined recent progress in coordination, governance, and evaluation, including updates to the Terms of Reference and preparations for the upcoming ERN evaluation process.
Prof. Jondeau and Julie also shared developments in the evaluation and performance indicator system, which continues to guide how VASCERN measures its impact. They highlighted the implementation of CPMS 2.0, the new version of the Clinical Patient Management System, which provides improved tools for expert consultations and joint case discussions across Europe.
Treasure Udechukwu (VASCERN Communication Officer) presented updates on communication and dissemination, including a new website section that will serve as a central, user-friendly hub for patients and families. She also introduced the dissemination webinars, which will showcase the work of each Rare Disease Working Group (RDWG) to a wider audience. These initiatives, together with the network’s growing online presence and strong engagement rates, reflect VASCERN’s commitment to making information accessible and visible to all stakeholders.
Gloria Somalo (VASCERN Science and Education Officer) and Roberta Armignacco (VASCERN Science and Training Officer) shared updates on training and education, highlighting activities under the ERASMUS+ programme and ongoing development through Moodle-based e-learning. These projects aim to ensure that both clinicians and young professionals can access reliable, high-quality resources in the field of rare vascular diseases.
The first part of the morning concluded with updates from the Transversal Working Groups, covering Pregnancy, Psychology, and Registries.
Patient Perspectives and Involvement
Following the coordination updates, Eva Collado (European Patient Advocacy Group Chair) presented the progress of patient-led projects, new collaborations, and examples of growing engagement across the working groups. Her presentation underscored a key message: patients are not only participants but active partners in every aspect of VASCERN’s work.
By connecting patient organisations and clinical experts, the network continues to ensure that lived experience informs care guidelines, educational materials, and communication tools. This collaboration between patients and professionals remains one of VASCERN’s defining strengths.
The plenary session concluded with updates from the 6 Rare Disease Working Groups (RDWGs). Together, they provided a comprehensive view of the network’s activities and achievements.
Transversal Working Group Sessions
In the afternoon, participants joined the transversal working group sessions, Pregnancy, Psychology, Education, and Communication, which encouraged exchange, collaboration, and shared learning across the network.
In the Pregnancy Working Group, chaired by Prof. Julie De Backer and Dorte Guldbrand, discussions centred on ongoing research and collaboration. They shared updates on the inter-ERN paper on pregnancy and the Delphi study on drugs during pregnancy and lactation. Discussions addressed drug safety before, during, and after pregnancy, and explored new educational resources such as Pills of Knowledge, Do’s and Don’ts, and upcoming webinars.
The Psychology Working Group, led by Anne-Mette Bredahl, presented findings from its second-round survey on the availability of psychological support in VASCERN centres. The survey revealed disparities in access to care and highlighted the importance of stronger psychosocial support within multidisciplinary settings. Members also shared feedback from their Summer School workshops, which used interactive role play to improve communication and empathy skills. These sessions were well received, and plans are in place to expand them next year. The group also introduced the Toolkit for Communication between Healthcare Professionals and Patients/Caregivers, now available on the VASCERN website as a practical resource for training and daily practice.
The Education and Training Working Group, co-chaired by Gloria Somalo and Roberta Armignacco, reflected on the success of the VASCERN Summer School 2025 and discussed ideas to make future editions more interactive. The new VASCERN Moodle Platform was introduced as a central space for e-learning modules, webinars, and educational materials. The group also shared the Summer School Alumni Project, which will provide short- and mid-term mobility opportunities through ERASMUS+.
Meanwhile, the Communication Working Group, chaired by Treasure Udechukwu, focused on visibility and connection. The group reflected on VASCERN’s strong communication results over the past year from the steady growth of its social media platforms and newsletters, as well as significant increases in website traffic and resource downloads. The group discussed strategies to reach audiences beyond the ERN community, improve accessibility, and better highlight VASCERN’s impact. Members also contributed ideas to the Communication Strategy 2026, built around four priorities: visibility, engagement, accessibility, and impact.
These transversal sessions highlighted VASCERN’s multidisciplinary nature and the importance of shared learning among experts and patient representatives.
Rare Disease and Patient Working Groups in Action
The six Rare Disease Working Groups held several sessions across the two days. These smaller meetings are where much of the detailed collaboration takes place focusing on their ongoing studies, finalising documents, and planning new projects.
Several key outcomes followed these sessions. The Paediatric and Primary Lymphedema (PPL) Working Group approved revisions to its Do’s and Don’ts and finalised two new documents on hair removal and tattooing, which will soon be published. The Vascular Anomalies (VASCA) Working Group finalised its Diagnostic and Management Pathway for Arteriovenous Malformations (AVMs), marking another important step toward harmonised care across Europe.
Across all rare disease working groups, discussions emphasised the value of collaboration between clinicians and patient representatives in turning knowledge into practical tools that improve care for people with rare vascular diseases.
In parallel, the European Patient Advocacy Group (ePAG) held its own session, with participants joining both onsite and online. The meeting provided a space for patient advocates to exchange updates, share experiences from their respective disease areas, and discuss how to strengthen collaboration with clinicians across the network.
Collaboration beyond the sessions
Between sessions, the atmosphere was lively and full of conversation. Coffee breaks turned into opportunities for spontaneous discussions, with members exchanging ideas and sharing progress on ongoing projects. The hybrid format once again allowed those joining remotely to remain fully engaged in the discussions.
The networking event took participants to the Musée national de la Renaissance – Château d’Écouen, just outside Paris. Surrounded by art and history, participants had the opportunity to step away from the presentations, and enjoy informal exchanges that strengthened professional and personal connections. Conversations continued well into dinner.
What’s next for VASCERN
As participants left Paris or logged off from the virtual sessions, there was a shared sense of accomplishment. VASCERN Days 2025 once again demonstrated the power of collaboration and collective expertise in improving care for rare vascular diseases.
The meeting also marked the launch of applications for the VASCERN Summer School 2026, offering medical students, residents, and post-doctoral researchers the opportunity to learn from Europe’s leading experts in rare vascular diseases. Applications are open until 11 November 2025.
Participants left with new ideas, renewed partnerships, and a clear sense of direction for the year ahead. As VASCERN continues to deliver new tools, launch educational programmes, and expand patient access to expert information, the spirit of cooperation that defines the network remains stronger than ever.
We thank all members for their dedication and contributions to another successful VASCERN Days.