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October has been a busy and inspiring month for VASCERN. From meaningful exchanges at VASCERN Days 2025 in Paris to new educational tools and research opportunities, this month has been about collaboration and shared progress. In this issue, we look back at key moments, spotlight new resources, and share upcoming events and calls shaping rare disease care across Europe. |
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Highlights from VASCERN Days 2025 |
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In October, our members met in Paris to share updates, exchange ideas, and plan what comes next. It was good to reconnect in person, and see how much progress each group has made. The two days left everyone with new insights and a stronger sense of direction for 2026. |
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New Communication Toolkit for Rare Diseases |
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A new resource created by psychologists, clinicians, and patient advocates is now available to help improve communication in rare disease care. It includes real examples, role play exercises, and practical tips for healthcare teams. |
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Lymphoedema Colouring Book Receives Recognition |
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The patient-led colouring book was presented at the SFMV Congress in Lille and the ILF Conference in Canada. It helps children understand lymphoedema in a simple, engaging way and is now available in ten languages. |
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Vascular Anomalies in Focus at the World Orphan Drug Congress 2025 |
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At the World Orphan Drug Congress 2025 in Amsterdam, Prof. Miikka Vikkula (UCLouvain, VASCA Working Group) presented research on repurposing cancer drugs for vascular anomalies. His session explored scientific progress, challenges in collaboration with industry, and future directions in reformulation. |
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Marfan Europe Network Fosters Collaboration |
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A new paper highlights how the Marfan Europe Network is strengthening cooperation among patient organisations across Europe to improve support and advocacy. |
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Headaches in Moyamoya Angiopathy – New Consensus Review |
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The NEUROVASC Working Group’s latest review explores how headaches in Moyamoya angiopathy differ from typical migraines. It summarises what is known about causes, diagnosis, and management to help guide better care. |
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Our Rare Disease Working Groups continue to create practical tools that make care clearer and easier to access. Each resource offers reliable information for patients, families, and healthcare professionals across Europe. |
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HHT E-Learning Course |
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An online course that covers the key features of hereditary haemorrhagic telangiectasia, including diagnosis, genetics, and management, with an interactive quiz at the end. |
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Diagnostic & Management Patient Pathway for Heritable Thoracic Aortic Diseases |
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A step-by-step guide developed by the VASCERN Heritable Thoracic Aortic Diseases (HTAD) Working Group to diagnosis, management, and follow-up care for people with heritable thoracic aortic diseases. |
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Everything you wanted to know about vEDS |
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An open and insightful discussion with Prof. Tristan Mirault, Dr. Anna Stenborg, and patient advocate Eva Collado, where experts answered real questions from patients across Europe about living with vascular Ehlers-Danlos syndrome. The session covers pregnancy, pain, genetics, lifestyle, medication, and more. |
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Understanding the NOTCH3-SVD Staging System |
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This video introduces a new way to classify the severity of CADASIL and other NOTCH3-related small vessel diseases. Created by LUMC researchers with input from VASCERN experts, it explains the nine disease stages and how they can improve diagnosis, care, and research. |
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Compression in Paediatric and Primary Lymphoedema |
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In this video, Dr Kirsten F. van Duinen explains why compression therapy is central to managing paediatric and primary lymphedema. It outlines different compression types and their role in long-term care for patients. |
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Diagnostic & Management Patient Pathway for Lymphatic Malformations |
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A step-by-step guide developed by the VASCERN Vascular Anomalies (VASCA) Working Group to support healthcare professionals in diagnosing, managing, and coordinating care for patients with lymphatic malformations. |
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The coming months are full of opportunities to connect, learn, and collaborate on rare disease research and policy. Don’t miss these key events. |
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ESC Cardio Genomics 2025 – 5–6 December, Lisbon |
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This two-day conference will gather experts in inherited cardiovascular and vascular diseases to discuss new findings in genetics, diagnosis, and personalised care. |
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High-Level Meeting on European Research and Innovation for Rare Diseases – 9–11 December, Brussels |
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Taking place in Brussels, this three-day meeting organised by the European Commission will bring together policymakers, patient advocates, and researchers to explore ways to advance research and innovation in rare diseases. |
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2nd International Conference on Clinical Research Networks for Rare Diseases – 9–10 December 2025 |
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Held over two days, this global forum focuses on improving collaboration between rare disease research networks and strengthening data sharing across Europe. |
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European Conference on Rare Diseases & Orphan Products (ECRD 2026) – 3–4 June 2026, Prague |
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Europe’s largest rare disease policy event, organised by EURORDIS. This edition will focus on shaping a European Action Plan for Rare Diseases. Poster submissions are open until 6 March 2026. |
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Explore current opportunities to collaborate, apply for funding, and share your voice in rare disease research and policy. |
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ERDERA Networking Support Scheme – Round 2 |
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The second call for proposals is open to fund networking events on rare diseases and rare cancers. Eligible projects can receive up to €30,000 to support knowledge sharing and collaboration. The deadline is 7 April 2026 at 14:00 CET. |
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ERDERA 2026 Joint Transnational Call |
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The European Rare Disease Research Alliance (ERDERA) will launch its 2026 Joint Transnational Call on 10 December 2025, focused on “Resolving unsolved cases in rare genetic and non-genetic diseases through variant validation and new technological approaches.” An information webinar for applicants will take place on 16 December 2025, 15:00–17:00 CET. |
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Rare Barometer Survey – Deadline 16 November 2025 |
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People living with rare or undiagnosed conditions can still take part in the EURORDIS Rare Barometer survey. Your feedback will help shape rare disease policy and improve healthcare in Europe. |
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Thanks for reading this edition of the VASCERN newsletter and staying connected!
If you haven’t yet, come follow us on Bluesky. 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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