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Clinical Decision Support Tools

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.

Results (19)



































Marfan syndrome and Related Disorders Do’s and Don’ts Factsheets
October 18 2023

The new version of the Marfan syndrome and Related Disorders Do’s & Don’ts. 


Severe/Rare Infantile Hemangiomas (IH) Do’s & Don’ts
June 30 2023

Hereditary Haemorrhagic Telangiectasia Do’s and Don’ts Factsheets
May 26 2023

The new version 2 of the Hereditary Haemorrhagic Telangiectasia Do’s and Don’ts Factsheets


Moyamoya Angiopathy Do’s and Don’ts Factsheet
April 19 2023

CADASIL Do’s and Don’ts Factsheet
April 19 2023

Vascular Ehlers Danlos Syndrome Do’s and Don’ts Factsheets
March 20 2023

All Factsheets in one document


Children’s Compression Factsheet for patients (issue date 20/12/2021)
March 09 2023

Cellulitis Flowchart for Patients with Lymphedema (issue date 01/2022)
March 09 2023

Pregnancy and Lymphedema
March 09 2023

Pediatric and Primary Lymphedema Do’s and Don’ts
March 09 2023

All Pediatric and Primary Lymphedema (PPL) Factsheets in one document


Loeys-Dietz syndrome Do’s and Don’ts Factsheets
March 09 2023

Pregnancy delivery and postpartum care in vEDS – Breastfeeding
March 09 2023

Pregnancy delivery and postpartum care in vEDS-Delivery
March 09 2023

Pregnancy, delivery and postpartum care in Marfan Syndrome – Delivery
January 03 2023

Pregnancy delivery and postpartum care in vEDS – Pregnancy
January 03 2023

Pregnancy delivery and postpartum care in Marfan Syndrome – Postpartum care
January 03 2023

Pregnancy delivery and postpartum care in Marfan Syndrome – During Pregnancy
January 03 2023

Pediatric & Primary Lymphedema Skincare Do’s and Don’ts EN
June 21 2021

Pregnancy delivery and postpartum care in Marfan Syndrome – Before Pregnancy
September 17 2018

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