TRAINING COURSE – ROME 2023

Introduction

We are pleased to announce that the next “Patients experienced in hereditary myocardial diseases" will be held Saturday 4 November at the 'Giorgio Fregosi classroom - Palazzo Valentini – Via IV Novembre, 119/a – Roma.

This edition of the training course for expert patients in hereditary myocardial diseases offers a complete program to better understand these pathologies. During the event, topics such as the causes and clinical course of hereditary heart muscle diseases, the importance of genetic tests and genetic counseling, the management of contraception and pregnancy will be addressed. The psychological aspects related to diagnosis and therapies will also be examined, as well as cardiac arrhythmias and related treatment procedures.

The course also includes sessions dedicated to recommended physical activity, old and new drugs for cardiomyopathies, invasive techniques for their treatment, for example myectomy and mitral plastic surgery, and heart transplantation. The emotional aspects will also be explored through the narrative medicine approach and through the experiences and testimonies of patients. Finally, the program will include an overview of the activities of the Italian Cardiomyopathies Association (AICARM) and a summary of the course by the President Prof. Franco Cecchi.

The definition of Patient, according to the FDA (USA) is: any person with, or at risk of, a specific health condition, whether or not they receive therapy to prevent or treat that condition. The concept of "experienced patient"Was expressed in 1985 by Prof. David Tuckett, of the University of Cambridge (GB), who stated that medical treatment would have been more effective if doctors had considered patients as experts in their own pathologies. By themselves, the patient adds the perception of his own pathology, the changes that occur during the therapies, his skills, in close relationship with his doctor and with all the other health professions involved. He can also interact with other patients to share experiences.

The formation of the "experienced patient" of Hereditary diseases of the myocardium it also derives from the need for a new modality of interaction between doctor and patient, which takes into account the increased cultural level, the technological innovations that allow the dissemination of scientific information, and the sharing of diagnostic and therapeutic choices which is now constantly provided for in the Guidelines of the International scientific societies (Shared decision making). It is also expected to participate in the new operational and collaborative models between all the parties involved, in a process of mutual enrichment of knowledge, including the research and development of new drugs, with pharmaceutical companies and regulatory bodies (AIFA) in specific pathologies. .

The AICARM Association is convinced that it is necessary to contribute to the formation of the "experienced patient" of Hereditary diseases of the myocardium.