Health and Food Safety
SANTE Newsroom

Information to patients and health professionals: VASCERN’s Do’s and Don’ts Factsheets for rare vascular disease patients

VASCERN has produced valuable Do’s and Don’ts Factsheets for Rare Vascular Disease Patients in order to assist patients and the medical community in knowing the basic do’s and don’ts of common and emergency situations and the special considerations that need to be taken into account when these situations are encountered in patients with rare vascular diseases. We currently have Do’s and Don’ts documents for Marfan syndrome and related disorders (HTAD), Hereditary Haemorrhagic Telangiectasia (HHT), vascular Ehlers Danlos syndrome (MSA) and Pediatric and Primary lymphedema (PPL), produced by members of the corresponding Rare Disease Working Groups (RDWGs). An additional Do’s and Don’ts will soon be released for Vascular Anomalies. The English translations of original French documents produced by the French network on rare vascular diseases (FAVA-Multi) were provided as a starting point to all groups. There was then a in-depth discussion within each RDWG in order to achieve consensus and harmonisation at European level for the recommendations provided for each topic presented in the factsheets. The PPL WG chose to create the majority of their factsheets from scratch and only used some of the original topics seen in the French documents. Once the VASCERN factsheets had been finalised by the four groups, they were translated into various EU languages. Members of each RDWG then reviewed and validated the translations in their native languages. The factsheets have since been widely shared thanks to our ERN communication efforts. This project displays a true spirit of teamwork from all members involved, the EU added value of the ERNs and the added benefit of collaborating with established national rare disease networks.