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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 (22)


































Pediatric and Primary Lymphedema Do’s and Don’ts Infographic
July 01 2024

Pediatric and Primary Lymphedema Coloring Book
July 01 2024

This coloring book offers a fun and interactive way for children to learn about managing lymphedema. The activities in the book are tailored to educate children on the importance of proper skin care to prevent infections and keep their skin healthy.


Do’s and Don’ts Factsheets on Marfan syndrome and Related Disorders
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

Do’s and Don’ts Factsheets for Hereditary Haemorrhagic Telangiectasia (V2)
May 26 2023

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


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

Pediatric & Primary Lymphedema Do’s and Don’ts on Pregnancy
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


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 Children’s Compression Do’s and Don’ts
December 20 2021

Loeys-Dietz syndrome Do’s and Don’ts Factsheets
September 29 2021

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

Pediatric & primary lymphedema physical activity do’s and don’ts
December 03 2018

Do’s & Don’ts for Marfan Syndrome: Before Pregnancy
September 17 2018

This fact sheet provides expert recommendations for women with Marfan syndrome before they become pregnant.


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