ERN GUARD-Heart aims to develop a comprehensive approach for rare cardiac disease registration by establishing an overarching patient registry (the Heart-Core Registry) using standards and tools provided by the European Platform on Rare Disease Registration (EU RD Platform). For more READ MORE
Fellowship at the Cardiogenetics Laboratory Medical Genetics Center of the University Hospital Brussels Healthcare professionals, for example cardiologists/ cardiologists in training/ clinical geneticists and scientists/ clinical geneticists or scientists in training/ related disciplines, working in a medical centre in the READ MORE
2019 CALL FOR MEMBERSHIP TO THE EXISTING EUROPEAN REFERENCE NETWORKS (ERNs) OPENS 30 SEPTEMBER The first call for new members to join the 24 existing ERNs is going to open today (at noon) and runs until the 30th of November READ MORE
CPVT meeting Amsterdam On Saturday November 9th 2019 a CPVT meeting for patients and their families will be organized in AmsterdamUMC, location AMC. For more information please see the flyer and the program. Please register for the event by filling READ MORE
Participation of patients with Long QT Syndrome in sports Health care professionals are invited to ask advice for their long-QT patients, with regard to their participation in sports. This can be done by uploading patients information in the Clinical Patient READ MORE
Foundation Heart4Research launched app for medical studies and registries On March 28th, foundation Hart4Onderzoek (Heart4Research) launches in collaboration with European Reference Network (ERN) Guard-Heart Cardiac PATROL: Cardiac PAtient Trial and Registry TOoL. The app contains relevant scientific studies and database READ MORE
Dutch meeting for patients with long QT syndrome On March 2 2019 the Dutch meeting for patients with long QT syndrome was held in Amsterdam. The meeting was organized by ERN GUARD-Heart. Programm and flyer of Duth LQTS day
German ARVC day On February 23 2019 the German ARVC day was held in Munich. Flyer German ARVC day
5th ERN GUARD-Heart board meeting On Februari 13 2019 the 5th ERN GUARD-Heart Board Meeting was held in Paris.
ERN GUARD-Heart Patient Groups meeting On December 9 2018 the ERN GUARD-Heart Patient Groups meeting was held in Barcelona.