As participants in the Cardiomyopathies Matter initiative, we advocate for optimal cardiovascular health policies at the EU and national levels.
Cardiovascular diseases (CVDs), including cardiomyopathies, is Europe’s foremost health challenge: over six million new cases and 1.8 million deaths annually — one-third of all deaths — and cost Europe €282 billion each year1, a burden extending far beyond healthcare to lost productivity and long-term care.
Recognising this vast human and economic toll, the EU is stepping up its action on cardiovascular health. On 3 December 2024, EU Health Ministers adopted Council Conclusions2 calling for stronger prevention and early detection of CVDs. The European Commission has also announced a forthcoming European Cardiovascular Health Plan3, which should set out bold, coordinated strategies for prevention, early diagnosis, innovation, and rehabilitation to reduce the burden of CVDs across Europe, including cardiomyopathies.
Cardiomyopathies, a group of heart muscle diseases often caused by inherited genetic variants, reduce the heart’s ability to pump blood and remain a serious yet under-recognised public health threat. Despite their impact, they lack the targeted focus they urgently require. Affecting around 1.5 million people4 in Europe, these conditions are among the leading causes of sudden death and heart transplantation5, often due to delayed or incorrect diagnosis. Subtle symptoms — such as fatigue, shortness of breath or chest discomfort — make early identification challenging.
Underdiagnosed cardiomyopathies severely affect patients’ lives and can lead to fatal outcomes. Early detection followed by appropriate treatment can drastically reduce emergency hospitalisations, advanced interventions, and disability care. As many cardiomyopathies are inherited, diagnosis in one patient can enable family screening and risk identification, preventing severe outcomes in relatives. Prioritising early diagnosis and prevention is therefore a strategic investment in Europe’s health, productivity, and resilience.
The case for early diagnosis
Early diagnosis of cardiomyopathies is not just a clinical goal but a policy necessity. The earlier these inherited conditions are detected, the better the outcomes for patients, families, and health systems. Yet systemic gaps across Europe continue to delay diagnosis until symptoms become irreversible or fatal.
The OECD estimates6 that diagnostic errors account for up to 17.5% of healthcare spending; halving them could free up 8% — hundreds of billions of euros for other health priorities. For cardiomyopathies, improving diagnostic accuracy would prevent avoidable hospitalisations, reduce long-term costs, and save lives. Early detection prevents invasive procedures, years lost to illness, and enables more citizens to contribute fully to society and the economy.
Because early-stage symptoms often go unnoticed, cardiomyopathies are rarely detected until advanced. When diagnosed early, cardiologists can apply targeted therapies, lifestyle adjustments, and preventive measures — such as implantable defibrillators — that reduce the risk of heart failure and sudden cardiac arrest. Early diagnosis changes the trajectory of the disease and provides hope for thousands of families.
Existing Challenges
At our recent policy debate organised at the European Parliament during Cardiomyopathy Awareness Month, we witnessed a growing consensus among healthcare professionals, patient advocates, and policymakers: early diagnosis of inherited cardiac diseases must become a cornerstone of EU health policy.
Persistent barriers, such as limited awareness among healthcare workers, unequal access to advanced diagnostics, and fragmented regulatory frameworks around genetic testing, must be urgently addressed.
There are available means to facilitate early diagnosis: cardiac MRI is a proven diagnostic tool for assessing various forms of cardiomyopathy, while genetic testing, holds transformative potential for identifying at-risk individuals and enabling family-wide screening. Yet, without harmonised screening policies and investment in specialist training, these tools remain underutilised.
There is also a human dimension of cardiomyopathies: delayed diagnosis affects not just one’s physical health, but mental well-being, family dynamics, and life opportunities. Once the disease is diagnosed, integrating psychological support and peer networks into care pathways is paramount for a truly patient-centred approach.
Call to action: early diagnosis to save lives
As the European Union prepares its next strategic health agenda, these reflections must translate into action. Cardiomyopathies Matter calls for the EU to embed early diagnosis of cardiomyopathies into the DNA of EU health systems, ensuring that no patient is left behind because their condition was invisible for too long.
Early diagnosis of cardiomyopathies is key to reducing avoidable deaths, improving quality of life, and optimising healthcare spending. As healthcare professionals, researchers, and patient representatives, we urge European policymakers to act decisively to close the gaps in early diagnosis of CVDs in general and of cardiomyopathies i
Persistent barriers, such as limited awareness among healthcare workers, unequal access to advanced diagnostics, and fragmented regulations around genetic testing, must be urgently addressed.
There are available means to facilitate early diagnosis: cardiac MRI is a proven diagnostic tool for assessing various forms of cardiomyopathy, while genetic testing, holds transformative potential for identifying at-risk individuals and enabling family-wide screening. Yet, without harmonised screening policies and investment in specialist training, these tools remain underutilised.
There is also a human dimension of cardiomyopathies: delayed diagnosis affects not just one’s physical health, but mental well-being, family dynamics, and life opportunities. Once the disease is diagnosed, integrating psychological support and peer networks into care pathways is paramount for a truly patient-centred approach.
Call to action: early diagnosis to save lives
As the European Union prepares its next strategic health agenda, these reflections must translate into action. Cardiomyopathies Matter calls for the EU to embed early diagnosis of cardiomyopathies into the DNA of EU health systems, ensuring that no patient is left behind because their condition was invisible for too long.
Early diagnosis of cardiomyopathies is key to reducing avoidable deaths, improving quality of life, and optimising healthcare spending. As healthcare professionals, researchers, and patient representatives, we urge European policymakers to act decisively to close the gaps in early diagnosis of CVDs in general and of cardiomyopathies in particular and address existing barriers and challenges in the framework of the European Cardiovascular Health Plan.
Drawing from the 2024-2029 policy recommendations7 that Cardiomyopathies Matter has put forward, we call on EU policymakers to advance early diagnosis of cardiomyopathies through:
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Embedding early detection of cardiomyopathies into the broader EU agenda on preventive health and non-communicable diseases.
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Supporting Member States in rolling out a European Cardiovascular Health Check that integrates early detection of cardiomyopathies and improving access to advanced diagnostic tools.
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Promoting systematic screening of family members of patients diagnosed with inherited cardiomyopathy, genetic counselling, and testing where recommended. It is key to establish legal frameworks to facilitate genetic testing and the sharing of genetic information with families at risk.
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Raising awareness among patients and healthcare providers of early symptoms of cardiomyopathies and enhancing competency-based training for cardiologists and radiologists to improve the interpretation of advanced diagnostic imaging.
By supporting early diagnosis of cardiomyopathies, the EU and its Member States will be better equipped to tackle the health, social, and economic burden that cardiomyopathies pose on patients, families, and the European society at large.
This article is a joint contribution, written by Patricia Tiramani, Development Executive and Council Lead for Cardiomyopathy at the Global Heart Hub (GHH), Rogier Veltrop, Group leader at the Department of Biochemistry at the Cardiovascular Research Institute Maastricht (CARIM) in The Netherlands and founder of LMNAcardiac, and Tootie Bueser, Director of Nursing & Midwifery of the Southeast Genomic Medicine Service Alliance in the United Kingdom
Cardiomyopathies Matter is a multi-stakeholder initiative funded by Bristol Myers Squibb and Philips that aims to raise awareness of cardiomyopathies among policymakers and to ensure these health conditions are given the policy attention they warrant both at national and EU levels.
Find out more about the initiative's work:
- Luengo-Fernandez R et al., Economic burden of cardiovascular diseases in the European Union: a population-based cost study. European Heart Journal. 2023 Dec 1;44(45):4752-4767.
- Council of the European Union. Conclusions on the improvement of cardiovascular health in the European Union. December 2024.
- Europe's Choice. Political Guidelines for the next European Commission 2024-2029. July 2024 and Mission Letter to Commissioner-designate for Health and Nimal Welfare. 17 September 2024.
- Cardiomyopathies Matter: a Policy Roadmap to improve cardiomyopathy detection and care in Europe. 2022.
- Lannou S, et al. The public health burden of cardiomyopathies: insights from a nation- wide inpatient study. J Clin Med 2020;9:92.
- Slawomirski, L. et al., The economics of diagnostic safety, OECD Health Working Papers, No. 176. 2025.
- Cardiomyopathies Matter. EU cardiovascular disease policies must tackle cardiomyopathies. Policy Recommendations for the 2024-2029 EU mandate. November 2024.
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