The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) is one of the six Rare Disease Working Groups (RDWGs) within VASCERN that specialize in a particular type/group of rare vascular disease(s). The HHT-WG is chaired by Dr. Sophie DUPUIS-GIROD from the HHT Center of Reference in Lyon, France, and Co-chaired by Prof. Elisabetta BUSCARINI, from the HHT Center at Maggiore Hospital in Crema, Italy.
These chairs, along with most of the Working Group members and collaborating centers, have been long-standing members of the Global Research and Medical Advisory Board (GRMAB) of the HHT Foundation International (now Cure HHT) with Hans-Jurgen MAGER currently serving as the GRMAB Vice Chair. We continue to maintain close collaborations with non-European HHT colleagues.
The VASCERN HHT-WG works in cooperation with the European Patient Advocacy (ePAG) represented by ePAG Co-Chair Christina Grabowski (Morbus Osler, HHT Germany).
The HHT-WG operates independently because in the more than 25 years that the partners have been working together, there has been little professional need to overlap with our colleagues and friends in the Vascular Anomalies Working Group (VASCA-WG), although we now have occasional joint sessions at VASCERN Days.