Do’s & Don’ts
The Do’s & Don’ts for managing pregnancy in women with rare vascular diseases provide practical, condition-specific advice aimed at ensuring the health and safety of both the mother and baby. These recommendations are developed by VASCERN’s Rare Disease Working Groups (RDWGs), who specialise in the care of conditions such as Heritable Thoracic Aortic Diseases (HTAD), Vascular Ehlers-Danlos Syndrome (vEDS), Neurovascular Diseases, and more.
These guidelines offer a clear and concise list of actions that healthcare providers and patients should follow (or avoid) during pregnancy to minimise risks and optimise outcomes. By adhering to these recommendations, healthcare professionals can provide more targeted, effective care for women with these complex conditions.
This factsheet from the VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group provides expert guidance for healthcare professionals managing pregnancy in HHT patients. Because HHT pregnancies are considered high-risk, the document outlines key recommendations for each stage—before, during, and after pregnancy—as well as during delivery. These include pre-pregnancy screenings for AVMs, anaemia management, careful monitoring of SaO₂ and dyspnea, safe anaesthesia practices, and postpartum follow-up care. The resource emphasizes tailored care and close collaboration with HHT reference centers to improve maternal and fetal outcomes.
While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.
This fact sheet provides expert recommendations for women with Marfan syndrome before they become pregnant.