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The Policy Roadmap

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.

mockup of the Cardiomyopathies Matter Roadmap showing a brochure  of the text and button to download
mockup of the Cardiomyopathies Matter Infographic showing a piece of sheet with a shadow and button to download

Expert Contributors


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


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


logo of LMNA Related Cardiac Diseases Network contributing organisations to the cardiomyopathies matter roadmap
logo of ARVC arrhythmogene rechtsventrikuläre Kardiomyopathie  contributing Arrhythmogenic right ventricular cardiomyopathy contributing association to the cardiomyopathies matter roadmap
logo of SAMS Asociación para Pacientes y Familiares con Síndromes Arrítmicos relacionados con la Muerte Súbita contributing organisation to the cardiomyopathies matter roadmap
logo of Cardio Alianza contributing organisation to the cardiomyopathies matter roadmap
logo of Foundation Cardiomyopathy Research, the Netherlands
for patients, their families and Healthcare professionals contributing organisation to the cardiomyopathies matter roadmap