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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 (26)


































HHT Do’s & Don’ts Factsheet on Pregnancy
May 22 2025

This factsheet from the VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group provides expert guidance for healthcare professionals managing pregnancy in HHT patients. Because HHT pregnancies are considered high-risk, the document outlines key recommendations for each stage—before, during, and after pregnancy—as well as during delivery. These include pre-pregnancy screenings for AVMs, anaemia management, careful monitoring of SaO₂ and dyspnea, safe anaesthesia practices, and postpartum follow-up care. The resource emphasizes tailored care and close collaboration with HHT reference centers to improve maternal and fetal outcomes.

While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.


CADASIL Do’s and Don’ts for Patients
November 21 2024

The “CADASIL Do’s and Don’ts for Patients” factsheet, developed by VASCERN’s NEUROVASC Working Group, offers patient-friendly recommendations to help patients with Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL) manage their health. Covering essential topics such as healthy lifestyle choices, social engagement, intellectual wellness, and seeking professional help, this guide empowers patients and caregivers with practical advice to improve their quality of life.

It is available in English and French.


Vascular Ehlers-Danlos Syndrome Do’s and Don’ts
October 25 2024

These factsheets provides expert consensus recommendations for the care of individuals with Vascular Ehlers-Danlos Syndrome (vEDS), a rare inherited connective tissue disorder. Designed for both patients and healthcare professionals, the document outlines essential “Do’s and Don’ts” in frequent clinical situations, including vascular emergencies, pregnancy and delivery, and medical management. Developed and updated by the VASCERN Medium-Sized Arteries Working Group (MSA-WG), the factsheets aim to support safe, informed decision-making and promote best practices across Europe.

Version 2, updated in October 2024.


HHT Do’s & Don’ts Factsheet for Long Flights
July 10 2024

This factsheet, developed by the VASCERN Hereditary Hemorrhagic Telangiectasia (HHT) Working Group, offers expert guidance for patients with HHT planning to take long flights. It outlines key recommendations to ensure safety and comfort during air travel, including wearing thromboembolic deterrent stockings (TEDs), staying hydrated, continuing prescribed medications (especially anticoagulants), and regularly moving around the cabin. It also emphasizes the importance of nasal care and being prepared to manage nosebleeds during flights.

While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.


HHT Do’s & Don’ts Factsheet on Managing Epistaxis
July 10 2024

This patient-centred factsheet, developed by the VASCERN Hereditary Hemorrhagic Telangiectasia (HHT) Working Group, outlines expert-recommended steps for managing epistaxis (nosebleeds). It provides clear do’s and don’ts for handling acute and persistent nosebleeds, emphasizing correct posture, applying pressure, and avoiding harmful practices such as tilting the head back or swallowing blood. The guide also includes preventive measures like using nasal lubricants and humidifying dry air.

While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.


Paediatric & Primary Lymphoedema Do’s and Don’ts Infographic
July 01 2024

Paediatric & Primary Lymphoedema Colouring Book
July 01 2024

This colouring book offers a fun and interactive way for children to learn about managing lymphoedema. 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

Paediatric & Primary Lymphoedema Do’s and Don’ts on Pregnancy
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

Cellulitis Flowchart for Patients with Lymphoedema
January 09 2022

Paediatric & Primary Lymphoedema on Do’s and Don’ts on Children’s Compression
December 20 2021

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

Paediatric & Primary Lymphoedema Do’s and Don’ts on Skincare
June 21 2021

Paediatric & Primary Lymphoedema Do’s and Don’ts
December 10 2018

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


Paediatric & Primary Lymphoedema Do’s and Don’ts on Physical Activity
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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