CONECT Project

CONECT Project (Cardio-Ocular NEtwork Connective Tissue)

gathers together several organisations dedicated to connective tissue rare disorders with cardiovascular involvement : Arterial Tortuosity Syndrome, Marfan Syndrome, Ehlers-Danlos Syndrome, Cutis Laxa, Loeys-Dietz Syndrome, etc… Initiated by the American Patient Organisation for Arterial Tortuosity (ATOF-ATS), it aims to build a collaboration to evaluate the common issues in a population with similar patients, to inform on possible treatments that are not widely known, to ensure that patients have a minimum of scientific and clinical knowledge on their disorder to be able to give their informed consent to take part in research programmes and to improve their quality of life. Online webinars have already been set up, for patients as well as health professionnals.