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.

 

Research gathering and stakeholder engagement are currently underway, and we look forward to publishing our white paper early in 2026.