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
November 21 & 22 2018: 4th Conference on the ERNs (Brussels, BE) The 4th ERN conference gathered more than 400 participants. ERN GUARD-Heart was represented by ten persons, including health professionals, project management, CPMS helpdesk and a patient representative. https://ec.europa.eu/health/ern/events/ev_20181121_en
November 15 2018: CPMS workshop for ERN experts The newly installed CPMS helpdesk for ERN GUARD-Heart will be trained to become experts in CPMS. The training will be on November 15 2018 in Brussels.
September 6 and 18 2018: RD-Connect webinars An invitation for ERN members to join RD-Connect, an international platform for rare disease data analysis and data sharing. Togerther with the ERN EURO-NMD, RD-Connect is organising a series of webinars aiming to READ MORE
4th Boardmeeting ERN GUARD-Heart On August 28 2018 the fourth official Board Meeting of ERN GUARD-Heart was held in Munich, Germany.
Therapeutic Innovation in Inherited Cardiovascular conditions Symposium On 8 June 2018 the Therapeutic Innovation in Inherited Cardiovascular conditions Symposium was held in London.
Cardiac Hereditary Diseases On 3 April 2018 the Cardiac Hereditary Diseases course was held from 8:30-17:00. The topics discussed are “Genetic diseases – an introduction”, “Nonsarcomeric causes of hypertrophic cardiomyopathies”, “Arrhythmogenic cardiac diseases” and “Genetic cardiopediatrics”.
Third Network Board Meeting The third official Board Meeting of ERN GUARD-Heart will be held on Wednesday 20 December 2017 in Amsterdam, the Netherlands. The meeting will be held from 9:30 till 16:00 at the Conference Centre ‘The Bazel’ in READ MORE
Second Network Board Meeting Following the official kick-off meeting of ERN GUARD-HEART in March 2017 in Vilnius, Lithuania, the second Meeting of the Network Board was held on 27 August 2017 at San Juan de Déu Barcelona’s Children Hospital, during READ MORE
“Special Electrophysiology Conditions in Children” Second Meeting The group of experts in the Thematic Area “Special Electrophysiology Conditions in Children” have organized their 2nd meeting on Wednesday, 19 July 2017 from 15:30-17:30 in Barcelona, Spain, during the 7th World Congress READ MORE