Rare Disease Working Groups

The rare vascular diseases in VASCERN are organized into six Rare Disease Working Groups (RDWGs). Each RDWG is composed of clinicians and patient representatives who work together to develop guidelines, recommendations, and educational resources for the diagnosis and management of specific rare vascular diseases.

The rare multisystemic vascular diseases are organized into groups for two reasons. Firstly, it helps patients and doctors to identify and address these complex vascular disorders easily. Secondly, it provides clarity on the needs that exist with these diseases, such as improving diagnosis times, increasing awareness among caregivers and the public, improving the quality of family counseling, reducing care gaps during the transition from pediatric to adult care, using relevant tests, and sharing medical knowledge and experiences through clinical trials.

You can explore the different RDWGs and Patient Representative Group that make up our network and learn more about our members by clicking on the organogram below.