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This summer introduced new resources, including expert-backed factsheets, a multilingual colouring book for children, and key meeting updates. June and July has been a productive period across our network. |
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Neurovascular Diseases (NEUROVASC) Working Group Summer Meeting 2025 |
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Held on 11 July in Essen, Germany, the VASCERN NEUROVASC Working Group came together for a productive day of case discussions, clinical insights, and forward planning. Topics included CADASIL, Moyamoya Angiopathy, and upcoming updates to educational tools. |
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Understanding CADASIL: A Spectrum of Clinical Manifestations |
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Hosted by the VASCERN Neurovascular Diseases (NEUROVASC) Working Group, this webinar explored the diverse ways CADASIL can present from strokes and migraines to cognitive symptoms. Prof. Hugues Chabriat provided expert insights with key takeaways for clinicians. |
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Paediatric and Primary Lymphoedema (PPL) Working Group Spring Meeting 2025 |
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The VASCERN Paediatric and Primary Lymphoedema (PPL) Working Group met in Brussels to exchange updates on ongoing projects, clinical practices, and outreach activities. The meeting featured insightful case-based discussions and reinforced the value of cross-centre collaboration. |
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New CPMS 2.0 app now available |
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The Clinical Patient Management System (CPMS) just became even more accessible with the launch of its new mobile app. Designed to support smoother case discussions and expert consultations across ERNs, CPMS 2.0 brings key functionalities straight to your phone. |
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World HHT Day 2025 |
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On 23 June, the global community came together to raise awareness for Hereditary Haemorrhagic Telangiectasia (HHT). VASCERN marked the day by highlighting key resources developed by the HHT Working Group from factsheets to educational videos all aimed at improving diagnosis and care. |
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Rare Disease News from Across Europe |
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€30,000 grants to support rare disease networking events |
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ERDERA has launched a new scheme offering up to €30,000 to support rare disease and rare cancer workshops, hybrid meetings, or conferences. Open to researchers, clinicians, and patient advocates from at least three ERDERA countries, with a focus on inclusion from underrepresented EU regions. The first deadline is 7 October 2025. |
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This month, we’re highlighting some new tools created to support patients and healthcare professionals. |
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Do’s and Don’ts Factsheet: Long Flights with HHT (For Patients) |
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Planning a long-haul flight this summer? This factsheet shares expert recommendations for people living with HHT on how to travel safely including wearing TED stockings and staying hydrated to managing nosebleeds in-flight. |
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Do’s & Don’ts Factsheet: Managing Epistaxis (Nosebleeds) (For Patients) |
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Nosebleeds are the most common symptom of HHT. This factsheet provides step-by-step guidance on managing acute episodes, what to do if bleeding persists, and how to prevent future nosebleeds with nasal care and environment adjustments. |
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Do’s & Don’ts Factsheet: Pregnancy and HHT (For Healthcare Professionals) |
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Pregnancy in women with HHT requires specialised care. This factsheet offers clear, expert-based guidance for healthcare professionals across all stages from pre-pregnancy screening to delivery considerations and postpartum follow-up. |
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Colouring Book for Children with Primary Lymphoedema |
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Designed to support young patients with primary lymphoedema, this beautifully illustrated colouring book helps children understand their condition in a gentle, age-appropriate way. Now available in French, German, Dutch, Spanish, Portuguese, Danish, and Slovenian, it’s a valuable resource for families across Europe. |
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VASCERN Days 2025 |
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Our annual meeting, VASCERN Days 2025 will take place in Paris from 24–25 October, bringing together or members, and other stakeholders from across Europe. Expect two full days of updates, discussions, and collaboration focused on improving care for patients with rare multisystemic vascular diseases. |
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Upcoming European & International Events |
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ESC Cardio Genomics 2025 |
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Mark your calendar for ESC Cardio Genomics 2025 — 5–6 December in Lisbon!
This key event in cardiovascular genetics will explore advances in diagnosing and treating inherited heart and vascular diseases. VASCERN experts will speak on aortopathies, variant interpretation, paediatric genetics, and ethics in genomic testing.
Early registration deadline: 13 October 2025;
Abstract submission deadline: 9 September 2025 |
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Thanks for reading this edition of the VASCERN newsletter!
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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Have a great summer, and see you in the next edition! |
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VASCERN, European Reference Network for Rare Multisystemic Vascular Diseases
46 Rue Henri Huchard, 75018 Paris, France
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