{"id":68504,"date":"2025-03-20T11:45:27","date_gmt":"2025-03-20T10:45:27","guid":{"rendered":"https:\/\/www.cmtc.nl\/blog\/2025\/03\/20\/vascern-conferentie-2025-berlijn\/"},"modified":"2025-03-20T13:14:14","modified_gmt":"2025-03-20T12:14:14","slug":"vascern-conferentie-2025-berlijn","status":"publish","type":"post","link":"https:\/\/www.cmtc.nl\/en\/blog\/2025\/03\/20\/vascern-conferentie-2025-berlijn\/","title":{"rendered":"VASCERN Conference 2025 &#8211; Berlin"},"content":{"rendered":"<p data-start=\"0\" data-end=\"235\">On February 10-11, 2025, the VASCA Winter Meeting brought together dedicated medical professionals, researchers, and patient representatives to share insights and collaborate on improving care for individuals with vascular anomalies.<\/p>\n<p data-start=\"237\" data-end=\"412\">VASCERN is one of the European Reference Networks (ERNs) focused on rare multi system vascular diseases. As an organization, we are affiliated with both ERN VASCERN and SKIN.<\/p>\n<p data-start=\"414\" data-end=\"894\">All healthcare providers involved are part of nationally recognized reference or excellence centers in their respective countries. These professionals have established extensive European collaborations through their specific rare disease networks. They joined this ERN to promote and strengthen European cooperation in the field of rare multi system vascular diseases, following a shared, multidisciplinary approach to patient care, with the goal of tackling challenges together.<\/p>\n<p data-start=\"896\" data-end=\"1070\">Healthcare providers are committed to improving diagnosis, treatment, and care for and with patients by leveraging all the opportunities and activities that VASCERN offers.<\/p>\n<p data-start=\"1072\" data-end=\"1223\">What makes this conference unique is that doctors and patient organizations from across Europe come together for two days to collaborate intensively.<\/p>\n<p data-start=\"1225\" data-end=\"1330\" data-is-last-node=\"\" data-is-only-node=\"\">As an organization, we are participants in the <strong data-start=\"1272\" data-end=\"1329\">Vascular Anomalies Working Group: VASCA Working Group<\/strong>.<\/p>\n<h2><span class=\"c-heading -h3\" data-start=\"495\" data-end=\"558\"><strong data-start=\"498\" data-end=\"556\">Day 1: Driving innovation in patient care and research<\/strong><\/span><\/h2>\n<p><span class=\"c-heading -h5\">The first day kicked off with a warm welcome from Prof. Miikka Vikkula, setting a positive tone for discussions on clinical guidelines, patient registries, and collaborative research efforts.<\/span><\/p>\n<h3><span class=\"c-heading -h5\" data-start=\"816\" data-end=\"870\"><strong data-start=\"820\" data-end=\"868\">Refining patient pathways and best practices<\/strong><\/span><\/h3>\n<p><span class=\"c-heading -h5\">A significant part of the day was dedicated to finding better ways to care for patients. Key discussions included:<\/span><\/p>\n<ul data-start=\"986\" data-end=\"1437\">\n<li data-start=\"986\" data-end=\"1139\"><span class=\"c-heading -h5\">The VAS Atlas, an international initiative collecting and documenting vascular anomaly cases to improve clinical understanding and awareness.<\/span><\/li>\n<li data-start=\"1140\" data-end=\"1297\"><span class=\"c-heading -h5\">New Do\u2019s and Don\u2019ts factsheets with practical advice to help healthcare providers and patients navigate lymphatic malformations and arteriovenous malformations (AVMs).<\/span><\/li>\n<\/ul>\n<h3><span class=\"c-heading -h5\"><strong data-start=\"1443\" data-end=\"1482\">Expanding data and registry efforts<\/strong><\/span><\/h3>\n<p><span class=\"c-heading -h5\" data-start=\"1485\" data-end=\"1576\">Data collection and registries remain a key pillar of VASCA\u2019s work. Updates included:<\/span><\/p>\n<ul data-start=\"1577\" data-end=\"1911\">\n<li data-start=\"1577\" data-end=\"1664\"><span class=\"c-heading -h5\">Progress on VASCA\u2019s central registry, which is growing to include more centers.<\/span><\/li>\n<li data-start=\"1665\" data-end=\"1768\"><span class=\"c-heading -h5\">The NARRATIVE extension, designed to enhance the depth of patient data collection and analysis.<\/span><\/li>\n<li data-start=\"1769\" data-end=\"1911\"><span class=\"c-heading -h5\">A discussion on Orphanet Codes, ensuring rare vascular conditions are classified correctly for better research and treatment tracking.<\/span><\/li>\n<\/ul>\n<h3><span class=\"c-heading -h5\" data-start=\"1913\" data-end=\"1973\"><strong data-start=\"1917\" data-end=\"1971\">Empowering patients through research and education<\/strong><\/span><\/h3>\n<p><span class=\"c-heading -h5\" data-start=\"1974\" data-end=\"2271\">Sessions also tackled patient education, pregnancy and contraception considerations, and the latest scientific advancements. One of the most anticipated updates was about a new information leaflet designed to help patients with vascular anomalies navigate pregnancy safely and confidently. This resource is expected to be available soon.<\/span><\/p>\n<p><span class=\"c-heading -h5\" data-start=\"2273\" data-end=\"2355\">The day wrapped up with an update on VASCERN\u2019s education efforts, including:<\/span><\/p>\n<ul data-start=\"2356\" data-end=\"2653\">\n<li data-start=\"2356\" data-end=\"2489\"><span class=\"c-heading -h5\">Plans for the Summer School 2025, which received over 200 applications from medical students, residents and post-doctoral researcher across Europe and beyond.<\/span><\/li>\n<li data-start=\"2490\" data-end=\"2653\"><span class=\"c-heading -h5\">Training programs for developing partner countries, with discussions on potential Erasmus+ funding to facilitate staff mobility and knowledge exchange.<\/span><\/li>\n<\/ul>\n<p><span class=\"c-heading -h5\" data-start=\"2655\" data-end=\"2828\">After a long day of insightful discussions, the day ended with an opportunity for participants to connect and share experiences over dinner.<\/span><\/p>\n<h2><strong><span class=\"c-heading -h3\">Day 2: Strengthening data and patient advocacy<\/span><\/strong><\/h2>\n<p><span class=\"c-heading -h5\" data-start=\"2892\" data-end=\"2996\">The second day had a sharper focus on data management, patient registries, and patient engagement.<\/span><\/p>\n<h3><span class=\"c-heading -h5\" data-start=\"2998\" data-end=\"3053\"><strong data-start=\"3002\" data-end=\"3051\">Enhancing data collection for better outcomes<\/strong><\/span><\/h3>\n<p><span class=\"c-heading -h5\" data-start=\"3054\" data-end=\"3221\">The morning began with a session on the Bleomycin electrosclerotherapy (BEST) treatment, where experts discussed efforts to standardize best practices and treatment outcomes across centers.<\/span><\/p>\n<p><span class=\"c-heading -h5\" data-start=\"3223\" data-end=\"3436\">A major highlight was an in-depth review of data items for the VASCA registry, ensuring that the right patient information is captured efficiently to support future research and clinical decision-making.<\/span><\/p>\n<h3><span class=\"c-heading -h5\" data-start=\"3438\" data-end=\"3479\"><strong data-start=\"3442\" data-end=\"3477\">Patient advocacy and engagement<\/strong><\/span><\/h3>\n<p><span class=\"c-heading -h5\" data-start=\"3480\" data-end=\"3565\">The final session focused on patient-centered initiatives, with discussions on:<\/span><\/p>\n<ul data-start=\"3566\" data-end=\"3987\">\n<li data-start=\"3566\" data-end=\"3691\"><span class=\"c-heading -h5\">Creating education materials to ensure patients receive clear and accessible information about their conditions.<\/span><\/li>\n<li data-start=\"3692\" data-end=\"3813\"><span class=\"c-heading -h5\">Strengthening collaboration with patient organizations across Europe, ensuring better representation and support.<\/span><\/li>\n<li data-start=\"3814\" data-end=\"3987\"><span class=\"c-heading -h5\">The latest <a href=\"https:\/\/vascern.eu\/news\/european-reference-networks-2024-evaluation-report-highlights-achievements-and-opportunities\/\" target=\"_blank\" rel=\"noopener\">ERN evaluation results<\/a>, which recognized the ERN\u2019s strengths in education, networking, and patient care, while also identifying areas for improvement.<\/span><\/li>\n<\/ul>\n<p>\u00a0<\/p>\n<p><span class=\"c-heading -h5\">The VASCA Winter Meeting 2025 ended on an optimistic note, laying a strong foundation for future projects aimed at improving patient care and expanding international collaboration. The discussions and plans shared during these two days promise to bring real, positive changes for those affected by vascular anomalies.<\/span><\/p>\n<p><span class=\"c-heading -h5\">For more information and resources from the VASCA group, visit <strong data-start=\"4373\" data-end=\"4417\"><a href=\"https:\/\/vascern.eu\/group\/vascular-anomalies\/\" target=\"_blank\" rel=\"noopener\" data-start=\"4375\" data-end=\"4415\">their dedicated page<\/a><\/strong>.<\/span><\/p>\n<p><a href=\"http:\/\/vascern.eu\/about-vascern\/#1461615813276-1deb4aba-5bc8\" target=\"_blank\" rel=\"noopener\">More information about VASCERN<\/a><\/p>\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>On February 10-11, 2025, the VASCA Winter Meeting brought together dedicated medical professionals, researchers, and patient representatives to share insights and collaborate on improving care for individuals with vascular anomalies. VASCERN is one of the European Reference Networks (ERNs) focused on rare multi system vascular diseases. As an organization, we are affiliated with both ERN [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":68472,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[188],"tags":[],"class_list":["post-68504","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-external-conferences-other-en"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>VASCERN Conference 2025 - Berlin - CMTC-OVM<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cmtc.nl\/en\/blog\/2025\/03\/20\/vascern-conferentie-2025-berlijn\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"VASCERN Conference 2025 - Berlin - CMTC-OVM\" \/>\n<meta property=\"og:description\" content=\"On February 10-11, 2025, the VASCA Winter Meeting brought together dedicated medical professionals, researchers, and patient representatives to share insights and collaborate on improving care for individuals with vascular anomalies. 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