VASCERN Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations


As a deliverable of one of VASCERN’s Work Packages (development of guidelines for optimal care of patients facing common problems not related to their rare diseases) the Do’s and Don’ts factsheets were developped in order to assist patients and the medical community in knowing the basic do’s and don’ts of common and emergency situations (e.g. delivery, anaesthesia, stroke, surgery) that need to be considered in patients with rare vascular diseases.

The experts of our Rare Disease Woring Groups agree with the following recommendations but wish to emphasize that these are recommendations made by consensus at expert level. We would recommend that these factsheets be used as a guide to implement locally agreed policies. These factsheets are meant for patients as well as for caregivers. Implementing these recommendations should go hand in hand with strategies to educate patients about medical situations where specific care is required and about relevant symptoms and how to act when they occur.

Read the full document here


Factsheets by Rare Disease Working Group and Individual factsheets can be selected from the menu below

VASCERN Emergency cards are also available for Marfan syndrome (see HTAD-WG)

All Vascular Ehlers Danlos Syndrome (vEDS) Factsheets in one document:

 vEDS Do’s and Don’ts




Individual factsheets for each topic: 

Complications in vEDS

Peripheral arterial dissection

Abdominal emergencies


Arterial revascularisation

Aortic dissection

Acute coronary syndrome

Carotid cavernous fistulas



Pregnancy, Delivery and Postpartum care




Invasive investigations and treatment of common medical emergencies in vEDS


Pulmonary embolism

Venous Thrombosis

Antiplatelet agents and anticoagulants


The Vascular Anomalies Working Group (VASCA-WG) is currently working on the VASCA Do’s and Don’ts Factsheets, which should be made available soon.

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