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As 2024 comes to a close, we want to thank you for being part of the VASCERN community. In this November/December issue, you’ll find key updates, exciting resources, and a glimpse of what’s ahead for 2025. Let’s finish the year strong together! |
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CPMS 2.0: Transforming Rare Disease Collaboration |
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The European Commission has launched CPMS 2.0, an upgraded platform that makes it easier for doctors across Europe to work together on rare disease cases. This new version allows remote discussions, helping patients access expert care without the need for long-distance travel. With better security and usability, CPMS 2.0 is setting new standards for patient-centered care. |
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Prof. Anette Kjeldsen |
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The spotlight is on Prof. Anette Kjeldsen, Co-Chair of the HHT Working Group. Based at Odense University Hospital in Denmark, Prof. Kjeldsen has dedicated her career to improving care for Hereditary Haemorrhagic Telangiectasia (HHT) patients. She established Denmark’s HHT Center and leads groundbreaking research on treatment and quality of life for HHT patients. |
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First Patient Case Discussion held using CPMS 2.0 |
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VASCERN’s Vascular Anomalies Working Group held its first patient case discussion using the upgraded CPMS 2.0 platform. Experts from Italy, Sweden, and the Netherlands collaborated on three complex cases, showcasing CPMS 2.0’s potential to enhance diagnosis and treatment for rare vascular anomalies. |
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New CADASIL Do’s & Don’ts Factsheet Available |
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VASCERN’s NEUROVASC Working Group has released a CADASIL Do’s & Don’ts factsheet, offering expert tips for patients and caregivers. Available in English and French, it provides practical advice for managing daily life. |
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New Patient Pathway for Kaposiform Hemangioendothelioma (KHE) |
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VASCERN’s VASCA Working Group has released the KHE Patient Pathway, a comprehensive guide for healthcare professionals. It provides expert-backed guidance on diagnosis, treatment, and managing complications like Kasabach-Merritt Phenomenon (KMP). This vital resource ensures consistent, high-quality care for KHE patients across Europe. |
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Highlights from the 2024 CADASIL Symposium |
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The 2024 CADASIL Symposium in Paris brought together over 80 experts from around the world to share research and improve care for CADASIL patients. Key topics included new studies, updates on global collaborations, and a focus on supporting young researchers. |
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ERNs 2024 Evaluation: Key Achievements & Opportunities |
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The 2024 evaluation report highlights the success of European Reference Networks (ERNs) in improving rare disease care. Key achievements include patient-centered care, impactful training programs, and collaborative research. The report also outlines areas for growth, such as stronger national integration and enhanced digital tools. |
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Highlights from VASCERN Days 2024 |
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Relive the VASCERN Days 2024 that brought patient advocates and experts together to share updates, and plan future strategies. Key sessions focused on collaboration, innovation, and improving care for rare disease patients. |
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Do’s and Don’ts for Infantile Hemangiomas |
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VASCERN’s VASCA Working Group provides a practical Do’s and Don’ts factsheet for managing severe or rare Infantile Hemangiomas (IH). This guide covers key recommendations for wound care, medication management, and psychosocial support, offering actionable advice for parents and caregivers. |
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E-Learning course on Vascular Ehlers-Danlos Syndrome (vEDS) |
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Take VASCERN Medium Sized Arteries (MSA) Working Group’s interactive e-learning course on Vascular Ehlers-Danlos Syndrome (vEDS). Designed for healthcare professionals, researchers, and patients, it covers diagnosis, management, and emergency care with interactive modules. |
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Cellulitis / Erysipelas in Pediatric and Primary Lymphedema |
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This video explains cellulitis/erysipelas, a common bacterial infection often seen in Pediatric and Primary Lymphedema (PPL). It explains the clinical presentation, diagnosis, and treatment, making it valuable for both patients and healthcare professionals. |
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Hereditary Haemorrhagic Telangiectasia (HHT) and Pregnancy |
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Watch the replay of this insightful webinar from VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group to learn about managing HHT during pregnancy. Topics include key risks like Pulmonary and Hepatic Arteriovenous Malformations (PAVMs and HAVMs) and guidance for care at birth. |
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Managing HTAD: Insights from the 2024 ESC Guidelines |
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Learn about the latest recommendations for managing heritable thoracic aortic disease (HTAD), including Marfan syndrome, Loeys-Dietz syndrome, and Vascular Ehlers-Danlos syndrome with Prof. Julie De Backer and Dr. Gisela Teixido-Tura. This webinar breaks down these key recommendations from the 2024 ESC guidelines. |
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CADASIL Patient Pathway |
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The CADASIL Patient Pathway, created by VASCERN’s Neurovascular (NEUROVASC) Working Group, provides detailed steps for the diagnosis, management, and care of CADASIL patients. This essential tool is designed to support healthcare professionals in delivering optimal care. |
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VASCERN Days 2025 |
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Mark your calendars! VASCERN Days 2025 will take place on October 9–10, 2025, bringing together experts, patient advocates, and healthcare professionals from across Europe. Stay tuned for program details as we prepare to advance care for rare vascular diseases together. |
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Upcoming European & International Events |
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Marfan Foundation Spanish Summit 2025 |
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Mark your calendar for the Spanish Language Summit 2025 on January 25. This free virtual event, held from 4 PM to 6:30 PM CET, offers insights on genetic conditions like Marfan syndrome, Loeys-Dietz syndrome, and VEDS. Hear from top experts and inspiring patient stories. |
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2nd edition of the International Conference on Vascular Anomalies (VAC 2025) |
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Mark your calendars for the 2nd International Conference on Vascular Anomalies (VAC 2025), from February 11-14, 2025, in Berlin. Join experts, researchers, and clinicians to explore the latest advancements in vascular anomalies research and foster new treatment strategies. |
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Rare Disease Day 2025 |
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Join the global movement on February 28, 2025, to raise awareness for the 300 million people living with rare diseases. Participate in #LightUpForRare, share your story, or organize an event to support equity in care and research. |
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RE(ACT) Congress & IRDiRC Conference 2025 |
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The RE(ACT) Congress & IRDiRC Conference will take place on March 5-7, 2025, in Brussels, Belgium. This event brings together global experts to discuss rare disease research, data innovation, and advanced therapies. Abstract submissions close on December 31, 2024. |
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International Krupp Symposium on Juvenile Stroke |
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Join the International Krupp Symposium on Juvenile Stroke on March 14-15, 2025, in Essen, Germany. The event will cover the causes, diagnosis, and treatment of juvenile stroke, with expert-led workshops and discussions. Admission is free, but registration is required by February 15, 2025. |
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2nd ERN ReCONNET International Congress on Rare Connective Tissue Diseases |
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Join us at the 2nd ERN ReCONNET International Congress in Prague, April 9-11, 2025, focusing on rare connective tissue diseases. The event will cover key topics like diagnosis, clinical management, and quality of care, with a patient-centered approach. |
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European Human Genetics Conference 2025 |
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From May 24-27, 2025, the European Human Genetics Conference will bring together experts, researchers, and students to share groundbreaking insights in human genetics. Participate in workshops, lectures, and networking sessions, either in-person or virtually. Abstract submission deadline January 30, 2025. |
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ESC Congress 2025 |
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Join the largest cardiology event, ESC Congress 2025, from August 29 to September 1 in Madrid. Explore cutting-edge science, connect globally, and shape the future of cardiovascular care. Abstract submission deadline March 1, 2025. |
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The Medium-Sized Arteries (MSA) Working Group will host a webinar on Varicose Veins in January 2025. Stay tuned to our social media channels and website for updates.
Registration details available early January 2025! |
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Don't miss out on the latest discussions, achievements, and updates on our social media platforms. Follow VASCERN on social media to stay engaged with our vibrant community. |
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VASCERN, European Reference Network for Rare Multisystemic Vascular Diseases
46 Rue Henri Huchard, 75018 Paris, France
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