Kicking off the year with new research, new expert statements, new everything.
Welcome to the December/January edition of the VASCERN newsletter! As we dive into the updates of these month, we are excited to share valuable insights and resources related to rare multisystemic vascular diseases. Thank you for being an integral part of our community!
Featured Article
European Reference Network for Rare Vascular Diseases (VASCERN): When and how to use intravenous bevacizumab in Hereditary Haemorrhagic Telangiectasia (HHT)?
Hereditary haemorrhagic telangiectasia (HHT) is a rare vascular multisystemic disease that leads to epistaxis, anaemia due to blood loss, and arteriovenous malformations (AVMs) in organs such as the lungs, liver and brain. HHT treatments depend on clinical manifestations, and span multiple different medical, surgical and interventional disciplines. Separate to local treatments in the nose, in severe settings, intravenous bevacizumab has been proposed as treatment option, and the purpose of the current article is to assess the use of intravenous bevacizumab in patients with HHT in 2022 according to available data.
Associação Nacional de Doentes Linfáticos - andLINFA
andLINFA is a a pioneering patient association in Portugal dedicated to transforming the landscape of healthcare for those with primary and secondary lymphedema, rare vascular diseases, and lipedema.
This Pill of Knowledge (PoK) features a Q&A session between a patient and doctor in German answering common questions about pregnancy with primary lymphedema. This PoK is suitable for patients looking to start a family. Subtitle available in English.
Everything you wanted to know about vEDS: Expert Q&A
Watch the full replay of our highly informative and engaging webinar titled "Everything You Wanted to Know About vEDS", where VASCERN experts answer burning questions from patients across Europe about this rare disease.
Genetic Counseling in Heritable Thoracic Aortic Diseases: What You Need to Know
In this Pill of Knowledge video, Liesbeth Wildero - Van Wouwe, Genetic Counselor at Ghent University Hospital and member of the VASCERN Heritable Thoracic Aortic Diseases Working Group, shares her expertise on genetic counseling for Heritable Thoracic Aortic Diseases (HTAD).
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