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:

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

Haemoperitoneum

Arterial revascularisation

Aortic dissection

Acute coronary syndrome

Carotid cavernous fistulas

Pneumothorax

Stroke


Pregnancy, Delivery and Postpartum care


Pregnancy

Delivery

Breastfeeding


Invasive investigations and treatment of common medical emergencies in vEDS


Colonoscopy

Pulmonary embolism

Venous Thrombosis

Antiplatelet agents and anticoagulants


Exercise

The Pediatric and Primary Lymphedema Working Group (PPL-WG) is currently working on the PPL Do’s and Don’ts Factsheets, which should be made available soon.

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.

Comments are closed