Do’s and Don’ts
Our Do’s and Don’ts factsheets were created to help patients and the medical community understand the basic do’s and don’ts of common and emergency situations (e.g., delivery, anesthesia, stroke, surgery) that must be considered in patients with rare vascular diseases.
The experts in our Rare Disease Working Groups agree with the following recommendations, but it is important to note that these are expert-level recommendations made by consensus. We recommend using these factsheets as a guide for implementing locally agreed-upon policies.
These factsheets are intended for both patients and caregivers. Implementing these recommendations should be accompanied by strategies to educate patients about medical situations requiring specific care, as well as relevant symptoms and how to respond when they occur.
You can choose from the research tool below to view factsheets by the Rare Disease Working Groups.
The new version 2 of the Marfan syndrome and Related Disorders Do’s & Don’ts.
The new version 2 of the Hereditary Haemorrhagic Telangiectasia Do’s and Don’ts Factsheets
All Factsheets in one document
All Pediatric and Primary Lymphedema (PPL) Factsheets in one document