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 “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.
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.
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.
The new version 2 of the Marfan syndrome and Related Disorders Do’s & Don’ts.
All Pediatric and Primary Lymphedema (PPL) Factsheets in one document
This fact sheet provides expert recommendations for women with Marfan syndrome before they become pregnant.