Cardiomyopathy Patient Day, held in Szeged on 13 September 2026, was organised as a satellite event marking World Heart Day. The event was arranged in association with the SZÍVSN (“Heartily”) National Patient Advocacy Group.
The programme featured a lively and informative series of presentations that explored every stage of the patient journey from the patient’s perspective. Following a brief introduction by Prof. Dr Robert Sepp, the ERN GUARD-Heart representative at the Szent-Györgyi Albert Clinical Centre of the University of Szeged, the speakers addressed the practical aspects of diagnosing cardiomyopathies. Treating physicians answered key questions—such as “What makes a rare disease rare?”, “How is a diagnosis established, and for whom?”, and “What is the purpose of genetic testing?”—in clear, accessible language.
Knowledgeable genetic counsellors then explained the particular challenges involved in reaching a genetic diagnosis. They outlined the testing process, discussed how results are reported, and emphasised the importance of family screening. Once the diagnostic pathway had been explored, attention turned to treatment and long-term disease management. The speakers considered questions including “What do I need to know if I have just been diagnosed with heart muscle disease?” and “How can I live well with a chronic condition?”
Another engaging presentation examined reliable sources of information about heart muscle diseases and discussed the risks of misleading or harmful online content. A psychologist from the multidisciplinary team addressed deeply personal questions such as “Why me?” and “Why my family?”, and how to combat with the psychological burden of the disease, prompting a strong response from the audience. The coordinator of the SZÍVSN (“Heartily”) National Patient Advocacy Group also offered an insight into the organisation’s day-to-day work and encouraged patients to become involved in peer-support and advocacy communities.
The most powerful contribution, however, came from Péter Kovács, a patient living with hypertrophic cardiomyopathy who now serves as the group’s “HCM Ambassador”. He described his demanding and gruelling medical journey that began with successful resuscitation following sudden cardiac arrest. This was followed by numerous interventions, including ICD implantation—with a subsequent appropriate ICD discharge—alcohol septal ablation, pulmonary vein and ventricular tachycardia ablation, sympathectomy, and multiple cardiac catheterisations and cardioversions. Thanks to advanced treatments, including myosin inhibitors, he is now able to lead an active, balanced, and near-normal life. His experiences inspired him to join the patient advocacy group, where he supports others by sharing knowledge and encouragement, connecting patients with one another, and helping them identify appropriate medical experts across the country.
Cardiomyopathy Patient Day demonstrated how organisations such as the European Reference Networks can bring patients, clinicians, counsellors, psychologists, and advocacy groups together. By combining expert knowledge with lived experience, the event provided practical guidance, fostered a sense of community, and showed how coordinated support can make a meaningful difference in the lives of people affected by cardiomyopathy.