VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases

🌍 At the heart of rare disease care is community, and the VASCA Magazine brings that community to life.   The 2nd edition of the magazine offers a blend of expert insights and patient stories that make the work in vascular anomalies feel more connected and impactful. In this issue: 🔷 Hear from patients who share their journeys. 🔷 See how VASCERN and the Vascular Anomalies (VASCA) Working Group are advancing research and support in the field of vascular anomalies.  🔷 Get up-to-date insights on diagnostics, treatments, and patient-centred approaches to care. For those dedicated to transforming rare disease care, this magazine is both informative and inspiring. We invite you to explore it and join us on the journey to make a difference. 🔗 Read the 2nd Edition: https://lnkd.in/eS2gPWwK

One of the most unexpected and impactful parts of VASCERN Summer School for Sharone Keysa was hearing directly from patients and caregivers. Coming in, she expected theory and clinical insights, but left with a new appreciation for the human side of rare disease care. Listening to their voices brought context, empathy, and a deeper purpose to her learning. VASCERN Summer School is also about understanding the real lives behind the diagnoses. If you’re passionate about rare diseases, don’t miss the chance to learn and connect. Apply by November 11, 2024 ➡ https://lnkd.in/eaBsAYvi #VASCERNSummerSchool #RareDisease #Patientcare #Medicalstudents #Vascularmedicine

It’s not every day you get to deepen your knowledge of a rare disease that impacts one of your own patients. For Dimitrije Stevanović, learning about hereditary haemorrhagic telangiectasia (HHT) from top experts at VASCERN Summer School was a game-changer. The practical insights shared have equipped her with new tools and perspectives that she’s eager to bring back to his clinical practice. At VASCERN Summer School, it’s about learning that directly translates into better care. If you’re looking to enhance your expertise in rare diseases, don’t miss out. Applications close November 11, 2024. Join us! ➡ https://lnkd.in/eaBsAYvi #VASCERNSummerSchool #RareDisease #Patientcare #Medicalstudents #Vascularmedicine

What makes learning at VASCERN Summer School so unique? For Anneli C S Bolund, it’s the hands-on case discussions that make all the difference. Being there in person, surrounded by Europe’s top experts, opens the door to asking questions freely, diving into complex cases, and gaining insights you can’t find in books. These sessions fuel curiosity and bring new perspectives to rare disease care. If you're ready to learn in an interactive, collaborative environment, apply to VASCERN Summer School today! ➡ Apply by November 11, 2024: https://lnkd.in/eaBsAYvi #VASCERNSummerSchool #InterdisciplinaryLearning #RareDisease #Patientcare #CaseDiscussions #Medicalstudents #Vascularmedicine

For Anh Leová, attending the VASCERN Summer School was a step toward her dream of becoming more knowledgeable and effective in rare disease care. This experience has expanded her understanding of rare vascular diseases and given her new skills to communicate with patients in a meaningful way. The VASCERN Summer School provides participants with invaluable knowledge and practical skills for supporting patients with rare diseases. It’s about bridging the gap between learning and compassionate care. Applications are open until November 11, 2024. Join us and make your mark in rare disease care! ➡ https://lnkd.in/eaBsAYvi #VASCERNSummerSchool2025 #RareDiseases #HealthCareEducation #ClinicalSkills #FutureDoctors #HybridLearning #VascularMedicine #Research

Did VASCERN Summer School meet expectations? Anna-Mariia Koval found it was so much more than expected! As an ophthalmologist, she learned how critical her role could be in the diagnostic pathway, often the first to spot signs of rare vascular diseases and refer patients to specialists. But beyond the medical knowledge, it was the openness and collaboration that left a lasting impact. Experts and peers across disciplines shared insights freely, creating an environment where every question was welcomed and every perspective valued. Apply now and experience it for yourself! Applications close November 11, 2024 ➡ https://lnkd.in/eaBsAYvi #VASCERNSummerSchool2025 #RareDiseases #HealthCareEducation #ClinicalSkills #FutureDoctors #Healthcareprofessionals #HybridLearning #VascularMedicine

📢 Ready to move beyond the basics and tackle the complexities of rare diseases? The VASCERN Summer School 2025 is the perfect next step in your journey! This program is packed with hands-on workshops, patient case discussions, and sessions led by Europe’s top experts in rare vascular diseases. Gain skills and insights you won’t find in textbooks, knowledge that truly impacts patient care, and connect with peers and mentors equally driven to transform rare disease healthcare. Take the leap and secure your spot in one of the most impactful training programs on rare vascular diseases! ⏳ Application deadline: November 11, 2024. ➡ Apply now: https://lnkd.in/eaBsAYvi #VASCERNSummerSchool2025 #RareDiseases #HealthCareEducation #ClinicalSkills #FutureDoctors #HybridLearning #VascularMedicine

VASCERN Days 2024 may have wrapped up, but the impact of these two days will guide our work forward. Here’s what made VASCERN Days 2024 impactful: ☑ Collaborative sessions that encouraged new approaches to patient care ☑ Powerful patient insights shaping a more inclusive future ☑ Working groups laying the groundwork for real-world progress Read our full recap article on #VASCERNDays2024 ➡ https://lnkd.in/e3zHFrZe #RareDiseases #PatientAdvocacy #Healthcare #VascularHealth

Improving care for patients with primary lymphedema during the VASCERN days; what a great team 🤩 Sarah Thomis Robert J Damstra Michael Oberlin Manuela Lourenço Marques Stéphane Vignes VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases

VASCERN Days 2024 has come to a close, and what an impactful and productive two days it has been! Our time together was filled with rich discussions, innovative ideas, and collaborative planning to advance care for rare vascular diseases across Europe. 📌 Day 1 Highlights Following our European Patient Advocacy Group (ePAG) presentation, the RDWG Chairs provided updates on the progress being made across specialities. Our Transversal Working Groups were not left out, tackling critical areas, from pregnancy care and psychological support to education and communication strategies. The day closed with RDWG sessions, where experts and patient advocates exchanged best practices and ideas, followed by a networking evening at ROYAUMONT - abbaye & fondation, a perfect setting for deepening connections and inspiring future collaborations. 📌 Day 2 Highlights On Day 2, we moved into collaborative case discussions, enabling cross-specialty insights for complex cases. Our patient advocates met for an ePAG session to discuss patient-centered approaches and the invaluable role of advocacy in shaping rare disease care. RDWG sessions continued, and we concluded with key reflections and next steps to drive our mission forward. Thank you to all our members and invited guests for bringing your expertise, dedication, and energy. Together, we’re building a stronger foundation for rare disease care across Europe. Stay tuned for our article on #VASCERNDays2024! #RareDiseases #HealthcareInnovation #VascularHealth #Collaboration