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March may be behind us, but we've gathered the month’s key highlights, resources, and upcoming events you won’t want to miss. Here’s what’s inside this edition:
- Featured Content: New booklet on pregnancy and vascular anomalies
- News Highlights: Key updates, articles, and meeting recaps
- Upcoming Events: Webinars, working group meetings, and more
- Educational Resources: Tools for both patients and professionals
- Join the Conversation: Follow us on Bluesky and help us reach 100!
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Pregnancy, Family Planning & Vascular Anomalies Booklet Now Available |
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We're excited to share a brand-new resource designed to support patients: the Pregnancy, Family Planning & Vascular Anomalies booklet. This practical guide includes expert-backed recommendations on medication use, care planning, and safety considerations for those with vascular anomalies before, during, and after pregnancy. Currently available in English, with translations planned. |
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VASCA Magazine moves online – Read the first article! |
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VASCA Magazine is now digital, making expert knowledge even more accessible. In our first online article, Dr. Carine van der Vleuten explores how genetic testing is reshaping the diagnosis of Klippel-Trenaunay and Sturge-Weber Syndromes, including a real-life case that challenges traditional definitions. |
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Key Updates from the Medium Sized Arteries Spring Meeting 2025 |
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Held in Rotterdam on April 15, the MSA Working Group advanced work on the Delphi study, emergency care tools, and vEDS clinical guidelines. Discussions also focused on educational videos, training, and the importance of cross-border collaboration. |
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Highlights from the Heritable Thoracic Aortic Diseases (HTAD) Spring Meeting 2025 |
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The HTAD Working Group met in Brussels on March 28 to share real-world cases, explore research topics like resveratrol therapy, and strengthen patient-centred outcomes. Updates included CPMS 2.0, POMs and PROMs, the HTAD registry, and upcoming care guidelines. |
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Inside the VASCERN Exchange: Dr. Daan Bosshardt’s Experience in Barcelona |
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As part of the VASCERN Exchange Programme, Dr. Daan Bosshardt (Amsterdam UMC) visited Vall d’Hebron University Hospital in Barcelona to explore care pathways and advanced aortic imaging for Marfan syndrome. In this insightful interview, he shares his key learnings on integrating research into clinical practice. |
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🎯 Spotlight on Vascular Ehlers-Danlos Syndrome (vEDS) |
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Vascular Ehlers-Danlos syndrome (vEDS) is a rare genetic condition that affects blood vessels and connective tissues. It can lead to serious complications, including arterial rupture, and early diagnosis is key to improving outcomes.
As we approach International EDS Awareness Month in May, we’re highlighting resources to help both patients and healthcare professionals better understand and manage this complex condition. |
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Updated Do’s and Don’ts Factsheets |
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This updated factsheet offers practical, everyday guidance for people living with vEDS. From medical alerts to physical activity, it highlights what to do and what to avoid for a safer, more informed approach to care. It’s a must-read for patients and clinicians. |
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Infographic – Know the signs of vEDS |
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What does vEDS really look like? This visual summary outlines key symptoms and statistics like translucent skin, easy bruising, and the fact that 50% of cases result from new mutations. Perfect for raising awareness. |
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Looking for extra resources or insights? Our upcoming webinar on 13 May might be just what you need. Check out the upcoming webinars section for details. |
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📅 Upcoming Webinars – Save the Dates! |
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Headache in Patients with Moyamoya Angiopathy |
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28 April 2025 – 17:00 CEST
Recurrent headaches are frequently reported by patients with Moyamoya angiopathy, yet their causes and management remain poorly understood. This upcoming webinar will explore this under-recognised symptom and its impact on quality of life.
For: healthcare professionals (neurologists, stroke specialists, GPs) and interested patients/families. |
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VASCERN MSA WG: Empowering you to live better with vEDS – Unlock the knowledge you need |
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13 May 2025 – 17:00 CEST
Living with vascular Ehlers-Danlos syndrome (vEDS) can be challenging, but having the right information makes all the difference. This patient-focused webinar will introduce the work of the Medium-Sized Arteries (MSA) Working Group and share trusted information and practical tools to help you live better with vEDS.
For: patients, families, caregivers, and anyone interested in vEDS. |
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🗓️ Upcoming VASCERN Events |
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VASCERN HHT Spring Meeting 2025 |
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The VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group will gather on May 22nd in Crema, Italy for their annual spring meeting, bringing together experts and patient advocates to discuss key developments, new projects, and research in HTAD.
Note: This meeting is exclusively for VASCERN members. |
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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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🎉 Milestones & Community Highlights |
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1,500 followers on LinkedIn! |
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We’re excited to share that VASCERN has reached 1,500 followers on LinkedIn!
Thank you to everyone who continues to support and engage with us. Your shares, likes, and comments help raise awareness and bring the rare disease community closer together. |
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VASCERN is on Bluesky – Help us reach our first 100 followers! |
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We’re gradually transitioning away from X—and building our new home on Bluesky! For expert updates, rare disease news, and behind-the-scenes insights, come follow us on our new account. We’re aiming for our first 100 followers—help us get there and join the conversation! |
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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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Thanks for reading! 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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