Genetic Testing
The project
A key objective is to expand access to genetic testing, which is currently inconsistent across and within countries. This 18-month project aims to drive policy change, raise awareness among decision-makers, and develop sustainable strategies to improve access to genetic testing and treatment for cardiomyopathy across Europe.
Why it matters
Cardiomyopathies are the most common inherited heart conditions, affecting 1 in 200–300 people and causing sudden cardiac death, especially in younger individuals. Though incurable, cardiomyopathy is manageable with the right treatment and support. Genetic testing is vital for accurate diagnosis, risk assessment, and tailored care, yet access is limited due to reimbursement issues, clinician uncertainty, and systemic inconsistencies.
Read the reports
We've now published the findings of this project.
Genetic testing in cardiomyopathy: ensuring our future health systems leave no family behind
This policy paper draws on desk research, expert interviews and a survey of representatives from 12 EU member states. It documents the current gaps in access to genetic testing across Europe - from uneven reimbursement to workforce capacity - and sets out the system enablers needed to address them.
Genetic testing in cardiomyopathy: recommendations for the European Union
This report translates our findings into a concise set of practical recommendations directed at EU institutions. It calls on the EU to address inequalities in access to genetic testing and counselling, invest in workforce capacity and cardiogenetic services, and ensure that forthcoming Council Recommendations include specific commitments on genetic testing - with cardiomyopathy as a pilot area for wider reform.
Both reports were led by ICoN with support from The Health Policy Partnership, and were developed with input from the project's Steering Committee, ICoN trustees and other contributing experts. They were sponsored by Bristol Myers Squibb, Cytokinetics, Pfizer, Amicus and Alnylam.
What's next?
As a registered charitable organisation and multidisciplinary network bringing together clinical, scientific and patient expertise in cardiomyopathy, ICoN will welcome opportunities to contribute to relevant working groups, task forces and stakeholder dialogues in the coming months as policy development progresses.