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The International Cardiomyopathy Network (ICoN) was established in 2019 as a multi-stakeholder group that seeks to improve the health of people affected by cardiomyopathy. Its long-term goals include better and more effective training of healthcare professionals, improvement in the wellbeing of people affected by cardiomyopathy, and increased awareness of cardiomyopathy among the general public and policymakers.
Trustees
Dr Aristides Anastasakis, Consultant Cardiologist, specialising in inherited and rare
cardiovascular diseases; Scientific Director, Unit of Inherited and Rare Cardiovascular
Diseases, Onassis Cardiac Surgery Centre, Greece
Professor Eloisa Arbustini, Director, Centre for Inherited Cardiovascular Diseases
and Transplant Research Area, IRCCS Foundation, University Hospital, Policlinico San
Matteo, Italy
Professor Lucie Carrier, Professor of Functional Genomics of Cardiomyopathies;
Team Leader, Department of Experimental Pharmacology and Toxicology, Cardiovascular
Research Center, University Medical Center Hamburg-Eppendorf, Germany
Professor Perry Elliott, Professor of Cardiovascular Medicine; Director of University
College London Centre for Heart Muscle Disease; Consultant Cardiologist,
St Bartholomew’s Hospital; Chairman, ESC Heart Academy; President, Cardiomyopathy
UK; former Chairman, European Society of Cardiology Working Group on Myocardial
and Pericardial Diseases, UK
Dr Juan Ramón Gimeno, Coordinator, Inherited Cardiac Disease Unit, Hospital Clinico
Universitario Virgen de la Arrixaca; Associate Professor, Internal Medicine-Cardiology,
Universidad de Murcia, Spain
Professor Juan Pablo Kaski, Professor, Paediatric Inherited Cardiovascular Medicine,
University College London Institute of Cardiovascular Science; Consultant Paediatric
Cardiologist; Director, Centre for Inherited Cardiovascular Diseases, Great Ormond Street
Hospital for Children, UK
Professor Aleš Linhart, Head, Department of Cardiovascular Medicine, Center for Fabry
Disease and Pulmonary Hypertension, Czech Republic
Professor Iacopo Olivotto, Professor, Cardiovascular Medicine, University of Florence;
Head, Cardiology, Meyer Children’s Hospital; Coordinator, Cardiomyopathy Services,
Careggi University Hospital, Italy
Professor Jolanda van der Velden, Professor of Physiology, Head Department
of Physiology, Amsterdam UMC, VU University, the Netherlands
In memoriam: Claudio Rapezzi
Professor Claudio Rapezzi, one of the founding members of ICoN, sadly passed away
before the publication of this manifesto. Claudio was a man of keen intellect, good
humour and kindness, and had been a pillar of the cardiomyopathy community for more
than three decades. He made a substantial scientific contribution to the field, but will be
most remembered as an inspirational teacher and mentor. This document reflects his
lifelong passion to improve the lives of people affected by cardiomyopathy.
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