EXPERT PATIENT TRAINING COURSE
MILAN 2024

Introduction

We are pleased to announce that the next “Patients experienced in hereditary myocardial diseases" will be held Saturday 23 March at San Luca Hospital, Auxological Institute Italian,
Piazzale Brescia 20, 20149 – Milan – Eighth floor meeting room.

During the course for Expert Patients, fundamental topics will be covered regarding the heart and hereditary diseases of the heart muscle, the importance of genetic counseling, the psychological implications of diagnosis and therapies, recommendations for physical activity and sports fitness , and essential information on arrhythmias in cardiomyopathies. Pharmacological therapy of cardiomyopathies and specific surgical procedures such as myectomy and mitral plasty will also be discussed. One segment of the course will focus on living with cardiomyopathy. Furthermore, we will talk about AICARM, with a focus on future projects and the Association's collaborations with Global Heart Hub and ERN Guard. Ample space will be given to discussion and questions, allowing for fruitful interaction between speakers and participants.

The expert patient

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.