Rare multisystemic vascular diseases include disorders which affect all types of blood vessels, with consequences for several bodily systems. These diseases require a multidisciplinary approach to care.
VASCERN comprises five Rare Diseases Working Groups: Hereditary Haemorrhagic Telangiectasia (HHT-WG), Heritable Thoracic Aortic Diseases (HTAD-WG), Medium Sized Arteries (vascular Ehlers Danlos Syndrome) (MSA-WG), Paediatric and Primary Lymphedema (PPL-WG) and Vascular Anomalies (VASCA-WG). A dedicated Patient-WG enables patient representatives to be involved in all activities of the ERN. In addition, several Thematic Working Groups are established to address communication, eHealth, ethics, patient registry, and training & education.
Networking, sharing and spreading expertise, promoting best practices, guidelines and clinical outcomes, patient empowerment, and improving knowledge through clinical and basic research are among VASCERN’s objectives.
Health professionals involved in VASCERN will give lectures on their areas of expertise and make educational materials available online. One-week fellowships will be set up to allow EU students to learn more about these rare presentations, and knowledge will be shared through the network and with health professionals not covered by the ERN.