The Heritable Thoracic Aortic Diseases Working Group (HTAD WG) is one of the six Rare Disease Working Groups (RDWGs) of VASCERN that specialize in a particular type/group of rare vascular disease(s).
The HTAD-WG is chaired by Prof. Dr. Julie De Backer, from the Center for Medical Genetics and Department of Cardiology, at Ghent University Hospital, Belgium. and Co-chaired by Prof. Dr. Guillaume Jondeau, from the French Reference Centre for Marfan Syndrome and Related Syndromes at AP-HP, Hôpital Bichat-Claude Bernard in Paris, France.
The HTAD-WG cooperates with the European Patient Advocacy Group (ePAG), who is represented in the WG by ePAG Co-Chair for HTAD Carmen QUIRÓS PAZ (Asociacion Española de Afectados por el Sindrome de Marfan (SIMA)).
Members of the HTAD WG are highly active in research and also collaborate with various scientific societies such as the European Society of Cardiology (ESC) and European society of Human Genetics (ESHG). They also collaborate with The Marfan Foundation, the Montalcino Aortic Consortium and the GenTAC Alliance.
Emergency cards are an important tool for patients and their families or caregivers to have the right information readily available in case of an emergency. The VASCERN Emergency Card for Marfan Syndrome is designed to help ensure that patients, their families or caregivers receive the right care in the event of a medical emergency.
VASCERN Emergency Card: Marfan syndrome (short version)
VASCERN Emergency Card: Marfan syndrome (extended version)