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Heritable Thoracic Aortic Diseases (HTAD-WG)

Introduction Diseases Covered

Experts & Centers

Experts Centers

Clinical Decision Support Tools

Patient Pathways Do’s and Don’ts Clinical Practice Guidelines (CPGs) adopted Clinical Expert Consensus Statements Written Outcome Measures

Registry

Research

Clinical Trials/Observational Studies Research Publications

Training and Education

E-Learning Pills of Knowledge (PoK) Webinars

Sub Working Groups

Aortic Imaging Gene Compendium

Pediatrics

Members

Variants

The Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) is built upon Multidisciplinary Centres of Excellence that have been collaborating and originating much of the recent progress in understanding Heritable Thoracic Aortic Diseases.

Recap of the Heritable Thoracic Aortic Diseases Spring Meeting

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.