Monthly case conferences held by the BBS Centre of Excellence, which bring together experts from key specialist areas, serve to discuss and improve treatment plans for all newly diagnosed BBS patients at Essen University Hospital, as well as special or complex clinical cases from other European centres.

In addition, communication and cooperation between people affected by Bardet-Biedl syndrome (BBS) and the BBS CoE and other important networks for rare diseases is to be strengthened. The goal is a coordinated approach to improving care structures, promoting interdisciplinary research, and improving the visibility and integration of BBS within the larger rare disease community. By developing accessible resources, interactive events, international networks and social media activities, we aim to improve patient education.  We also aim to educate healthcare professionals through clinical internships, training articles and international public relations work.

Dates and registration details will be announced here.