In cardiomyopathy care, family matters.
A causative genetic variant can be identified in around 20–60% of cases of the main four types of cardiomyopathy. Since cardiomyopathies often run in families, genetic testing can help confirm the diagnosis, inform the prognosis, guide decisions on treatment and family planning and achieve optimal management of these highly impactful diseases.
Despite the potential of genetic testing, there are substantial variations between and within countries in the use of, and patients’ access to, genetic counselling and testing. Broader changes to health systems and policies are needed to improve diagnosis and to ensure that cardiomyopathy patients have access to optimal care and support.
The Cardiomyopathies Matter article “Family matters: tackling inherited cardiomyopathies in the next EU policy mandate” outlines key EU-level policy recommendations necessary, in concert with national actions, to drive early diagnosis of cardiomyopathies, access to expert care, patient and family empowerment, and research and innovation.
This publication was developed with review and input from expert contributors.
