VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases

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

🚨Application deadline extended to November 11, 2024! The application deadline for the VASCERN Summer School 2025 has been postponed. This extra time means there’s still an opportunity to join a program that combines expert-led learning with practical insights into rare multisystemic vascular diseases. If you’re a medical student or post-doc researcher, this program offers a wealth of knowledge, networking, and hands-on experience to strengthen your impact in the rare disease field. Take advantage of this extension and apply today to secure your place! 🔗 https://lnkd.in/eaBsAYvi #VASCERNSummerSchool2025 #RareDiseases #MedicalEducation #HealthcareProfessionals #VascularDiseases #DeadlineExtended

One of the most inspiring parts of #VASCERNDays2024? It’s hearing from the European Patient Advocacy Group (ePAG). One of our ePAG Co-Chair, Manuela Lourenço Marques highlighted the critical role patients play in shaping healthcare for rare vascular diseases. From awareness projects to increasing patient involvement in all aspects of VASCERN, the ePAG is ensuring that patient voices remain central to VASCERN’s mission. It’s a reminder that collaboration between patients and healthcare professionals is key to improving care. #PatientAdvocacy #RareDiseases #PatientVoices

The Transversal Working Groups presented their crucial work at #VASCERNDays2024! Today’s sessions are focused on pregnancy, patient registries, and psychological support for rare vascular disease patients. These insights highlight how we can improve patient outcomes and provide holistic support. #HealthcareCollaboration #RareDiseases #PatientCare

Day 1 of #VASCERNDays2024 is off to a great start! Our coordinator, Prof. Guillaume Jondeau and our project manager, Julie Hallac just kicked off the VASCERN Annual Board Meeting with an overview of our network’s progress. We’re hearing about VASCERN’s management and coordination efforts, past and current grants, and exciting updates on key EU projects like JARDIN Joint Action and ERDERA. There’s also a focus on communication, training initiatives and new IT developments such as the CPMS 2.0. A big thank you to everyone contributing to the growth of VASCERN! #RareDiseases #VascularHealth #Annualmeeting

🔔 Don’t miss this important webinar on mental health and wellbeing in rare disease diagnosis! We’re excited to share that experts from VASCERN, alongside experts from ERN-EYE and ERN CRANIO will be presenting real cases and best practices on how to deliver rare disease diagnoses with compassion and care. 🗓️ Date: 23 October 2024 ⏰ Time: 1:30pm CEST 📢 Register here: https://lnkd.in/eTGtC5TF #MentalHealth #MentalWellbeing #RareDiseases #PatientCare

#Researchhighlight: Late diagnosis of Marfan syndrome linked to increased risk of aortic surgery and cardiovascular death. A recent study highlights the dangers of a late diagnosis of Marfan syndrome. Patients diagnosed after the age of 21 face an 8x higher risk of unplanned aortic surgery and a 4x higher risk of cardiovascular complications. 📊 Key Findings: These findings highlight the critical importance of recognising Marfan syndrome early. With early diagnosis, patients can receive appropriate monitoring and care, reducing the likelihood of life-threatening complications. 💡 Read more: https://lnkd.in/eGFgSYD8 #MarfanSyndrome #CardiovascularHealth #RareDiseases #Research #AorticHealth #EarlyDiagnosis #PatientCare

"The VASCERN exchange programme really broadens your view of your own procedures and structures and, in my case, led to some really crucial new insights." Dr. Meike Rybczynski took part in the VASCERN Exchange Programme, travelling from Germany to Paris to see how other centres manage the same challenges she faces every day. But what she discovered went beyond expectations. From sitting in on patient consultations to witnessing how seamless interdisciplinary collaboration can be, her time at Hôpital Bichat reshaped how she approaches care for patients with Heritable Thoracic Aortic Disease (HTAD). What did she take away? A renewed perspective on integrating different disciplines in rare disease care. Now, she’s bringing those lessons back to her team in Germany. Curious about the details of her exchange experience? Read the full interview here: https://lnkd.in/e9dkwer3 #MedicalExchange #RareDiseases #PatientCare #Collaboration #Cardiology