Cardiomyopathies have received little policy attention to date, despite conferring substantial disease burdens that could potentially be avoided through better healthcare.
The Cardiomyopathies Matter Roadmap aims to raise awareness about cardiomyopathies and to ensure they receive the policy attention they warrant from healthcare system decision-makers and influencers at the EU and national levels. To this end it:
- explains cardiomyopathies and their impact on patients, their families, healthcare systems and society
- identifies key challenges and unmet needs throughout the patient care pathway
- provides EU and national-level policy recommendations to address these challenges and improve patient outcomes.
Launched in November 2022, the Cardiomyopathies Matter Roadmap, was developed with contributions from the following experts coming from the fields of patient advocacy, cardiology, cardiac nursing and health economics.
Expert Contributors
Cardiology
Dr Pablo Garcia-Pavia
Director, Inherited Cardiac Diseases and Heart Failure Unit, Dept of Cardiology of Hospital Universitario Puerta de Hierro, Madrid, Spain; Member, ERN GUARD-Heart
Prof. Stefan Janssens
Head, Cardiovascular Disease Dept, University Hospitals (UZ) Leuven, Leuven, Belgium
Prof. Hugo Katus
Head of Internal Medicine, University of Heidelberg, Heidelberg, Germany; Chair, European Society of Cardiology Innovation Think Tank
Dr Stellan Mörner
Senior Consultant Cardiologist and Associate Professor, Dept of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden; Member, ERN GUARD-Heart
Prof. Iacopo Olivotto
Head of Cardiomyopathy Unit, Department of Experimental and Clinical Medicine, University of Florence; Head of Pediatric and Transitional Cardiology, Meyer University Children Hospital, Florence, Italy
Prof. Pablo Perel
Senior Science Advisor, World Heart Federation, Geneva, Switzerland, and Professor of Clinical Epidemiology, Non-Communicable Disease Department, London School of Hygiene & Tropical Medicine, London, UK
Prof. Maria T. Tome Esteban
Consultant Cardiologist and Professor of Practice Cardiology, Cardiovascular Clinical Academic Group, Inherited Cardiac Condition Service, St George’s Hospital NHS Foundation Trust and St George’s University of London, London, UK
Prof. Jean-Noël Trochu
Head, Thorax and Nervous System Institute and Heart Failure and Cardiomyopathies Unit, University Hospital, Nantes, France
Cardiac nursing
Dr Teofila (Tootie) Bueser
Director for Nursing and Midwifery, South East Genomic Medicine Service Alliance, Guy’s and St Thomas’ Hospital NHS Foundation Trust; Chief Nurse, North Thames Genomic Medicine Service Alliance, UCL Partners, London, UK
Economics
Dr Thor Henrik Brodtkorb
Senior Director, Health Economics RTI Health Solutions, Ljungskile, Sweden
Patient representatives
Dr Ruth Biller
Chair and Co-founder, ARVC-Selbsthilfe e.V., Munich, Germany; Chair, European Patient Advocacy Group, ERN GUARD-Heart; Member, Cardiomyopathy Patient Council, Global Heart Hub
Matteo Pinciroli
Chair, Cardiomyopathy Patient Council, Global Heart Hub; Patient Advocate and Co-Founder, AICARM (Italian Association for the study and research of Cardiomyopathies); Associate Partner, European Patient Advocacy Group, ERN GUARD-Heart
Patricia Vlasman
Patient Advocate, Foundation Cardiomyopathy Research, the Netherlands; Member, Cardiomyopathy Patient Council, Global Heart Hub
Members of the European Parliament (MEPs)
The Forewords of the Roadmap were contributed by the following MEPs:
Dr. Juozas Olekas
Socialists & Democrats, Lithuania; Member of the MEP Heart Group
Prof. Maria da Graça Carvalho
European People’s Party, Portugal; Co-Chair of the MEP Heart Group
Brando Benifei
Socialists & Democrats, Italy; Co-Chair of the MEP Heart Group
Organisations
