The first VASCERN European Patient Advocacy Group (ePAG) Spring Meeting happened in Paris on June 15, 2023. It was a significant event organized with the support of the European Organisation for Rare Diseases (EURORDIS), bringing together passionate patient advocates from Europe who are dedicated to making positive changes in the field of rare vascular diseases.
The day was filled with informative sessions and discussions, aimed at giving ePAG advocates the knowledge and tools they need to make a lasting impact. Here are the highlights of this remarkable gathering:
The meeting started with a warm welcome from the VASCERN Coordination Team, setting the stage for a day of collaboration and empowerment. Participants were greeted enthusiastically, fostering a sense of camaraderie and shared purpose. They had the opportunity to share their motivations for being ePAG advocates in VASCERN, which inspired everyone to overcome challenges and achieve tangible results.
Julie Hallac, the VASCERN Project Manager, presented the overall objectives that will shape the future of VASCERN. This session provided a strategic framework to guide attendees in brainstorming ideas for short-term and long-term goals to increase impact. Participants suggested various ideas to raise awareness of rare vascular diseases in Europe and expand the network to include other European countries, especially in Eastern and Central Europe.
Networking breaks gave attendees valuable opportunities to connect, exchange ideas, and build meaningful relationships. These interactions created a supportive network of like-minded advocates, strengthening the collective voice of rare vascular disease patients and their families.
Rita Francisco, a representative from the European Organisation for Rare Diseases (EURORDIS), discussed EURORDIS’ role in supporting patient partnerships within the European Reference Networks (ERNs). The EURORDIS Open Academy was introduced as a valuable resource, offering training opportunities to enhance the skills and knowledge of ePAG advocates. The VASCERN ePAG Co-Chairs shared best practices across 5 rare disease working groups, empowering each other with effective strategies for their work within VASCERN.
VASCERN Coordinator, Prof. Guillaume Jondeau, led an interactive session highlighting the role of ePAG advocates, challenges they face, and aspects of collaborative work in VASCERN. There was an in-depth discussion on the best ways for ePAG advocates to collaborate within VASCERN.
At the end of the meeting, ePAG Chair, Eva Collado, summarized the key takeaways of the day. She emphasized the need to continue collaborating to achieve VASCERN’s goals and stressed the importance of having the right tools, resources, and skills for ongoing advocacy efforts.
The first VASCERN ePAG Spring Meeting ended on a positive note, leaving a lasting impact on all attendees. The connections made, knowledge shared, and collaborative efforts initiated during this gathering will undoubtedly lead to tangible outcomes in the near future.
We express our heartfelt gratitude to all ePAG advocates for their unwavering commitment to improving the lives of those affected by rare vascular diseases.