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VASCERN Monthly Newsletter – August/September 2025 |
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In this edition, we share the call for applications to the VASCERN Summer School 2026, an urgent funding deadline from ERDERA, vEDS Action Month, and a spotlight tribute to Annika Wernström. We also highlight key resources from our working groups that continue to support patients and professionals. |
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Applications are now open! |
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The third edition of the VASCERN Summer School will take place from 14–19 September 2026 in Paris. This intensive programme is open to medical students, residents, and postdoctoral researchers who want to learn directly from experts in rare multisystemic vascular diseases. Over six days, participants will join interactive lectures, case discussions, and patient perspectives while connecting with peers and leading clinicians from across Europe. The programme is supported by Erasmus+ and funding opportunities are available. |
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VASCERN Summer School 2025 Recap |
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From online sessions earlier this year to six intensive days in Paris, the Summer School brought together 60 participants from 27 countries for lectures, patient perspectives, and real case discussions. Discover the highlights, photos, and takeaways from this unique training experience. |
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Rare Disease News from Across Europe |
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Apply now for the ERDERA Networking Support Scheme |
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There’s still time to submit your proposal for the new ERDERA Networking Support Scheme, offering up to €30,000 to fund rare disease or rare cancer networking events across Europe. The first evaluation will take place shortly after the deadline. Don’t miss your chance. |
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Share your voice! |
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EURORDIS has launched a global survey for people living with rare or undiagnosed conditions and their families. It runs in 25 languages, takes ~25 minutes, and explores what supports help you live, learn, work, and connect. Results due in 2026 and will guide policy and advocacy. |
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October is vEDS Action Month |
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Vascular Ehlers-Danlos syndrome (vEDS) is a rare genetic condition that affects connective tissue and can cause life-threatening complications. This month is dedicated to raising awareness, sharing resources, and supporting the vEDS community. Explore educational materials and tools to learn more about vEDS.. |
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Headaches in Moyamoya Angiopathy |
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Why do people with Moyamoya Angiopathy experience headaches, and what do those headaches mean for diagnosis and care? In this expert session, Prof. Anne Hege Aamodt and Dr. Dominique Hervé explain the causes, headache types, treatment options, and when surgery can make a difference. A must-watch for anyone interested in better understanding this complex symptom. |
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Varicose Veins in vEDS Explained |
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Varicose veins are common, but in vascular Ehlers-Danlos syndrome they carry added risks. In this patient-focused session, Dr. Michael Frank explains what varicose veins are, how they form, possible complications, and safe management strategies. The webinar also answers real patient questions, making it a practical guide for patients, families, and caregivers. |
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HHT and Pregnancy |
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Pregnancy in women with HHT requires careful management. In this expert session, leading specialists share the latest strategies for managing pulmonary and hepatic AVMs during pregnancy and provide guidance on delivery and care at birth. A clear and comprehensive resource for patients, families, and healthcare professionals. |
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Genetics and Primary Lymphedema |
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How does genetics shape primary lymphedema, and why is testing important for patients and families? In this Q&A session, patient advocate Carina Mainka speaks with Prof. Sahar Mansour to explore what genetics means for care, diagnosis, and family planning. A must-watch for anyone wanting clear answers about this condition. |
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VASCERN Days 2025 |
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The countdown has begun to our annual meeting, VASCERN Days 2025 will take place in Paris from 9–10 October, bringing together our 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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2nd International Conference on Clinical Research Networks for Rare Diseases |
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Join leading voices in rare disease research on 9–10 December for a hybrid conference on clinical research networks. Explore how collaboration, data sharing, and new technologies can transform diagnosis and care worldwide. |
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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. |
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In memory of Annika Wernström |
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The VASCERN ePAG mourns the passing of Annika Wernström, a dedicated advocate and cherished member of the HHT ePAG. Annika’s commitment, compassion, and strength touched all who worked alongside her and left a lasting mark on our community. We honour her life, her contributions, and the time, energy, and heart she gave to improving the lives of people with rare diseases. |
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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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VASCERN, European Reference Network for Rare Multisystemic Vascular Diseases
46 Rue Henri Huchard, 75018 Paris, France
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