A vice-président of the French Marfan patient organisation, a patient partner within the European reference network for rare vascular diseases with multi systemic manifestation's and a member of the ESC patient forum - Treasurer of the Marfan .Europe Network Experiential knowledge of sudden cardiac arrest following ventricular fibrillation, 2 open heart surgeries (Bentall and redux of Bentall) plus mitral valve replacement on a Marfanoid mitral apparatus, and annuloplasty on tricuspid valve plus patch between left ventricule and right atrium Defibrillator and pacemaker following atrioventricular block, permanent atrial fibrillation