AICARM NEWS – June 2025

Dear friends of AICARM,

At the beginning of this new summer, we offer you an important contribution to nourish that relationship of trust between patient and doctor that is the basis of a safe and peaceful life. Our legal assistant, the lawyer Elisabetta Renier, answers Francesca Conti's questions to clarify the essential legal aspects along a path made of choices and decisions that are often difficult, especially from a psychological point of view. As, for example, when it comes to implanting a defibrillator in the case of a high risk of cardiac arrest.

AICARM Aps lawyer Elisabetta Renier clarifies the patient's rights and highlights the fundamental legal aspects of the relationship between patient and doctor. Clear, complete and understandable information is necessary so that the patient can make informed choices. Communication becomes essential when deciding on interventions that have a strong psychological impact, such as living with an implanted defibrillator. The patient has the right to refuse the implant or, once inserted, even to ask for its removal. It is up to the doctor to ensure that the patient has understood the consequences of this decision.

Luca lives with hypertrophic cardiomyopathy and loves sports. Two years ago he had a cardiac arrest that he overcame thanks to the expertise of a boy who knew resuscitation techniques. Now he has decided to tell his story: if he can help even just one person to save another - he says - then everything that happened to him can make sense.

In four years of specialized training, over 500 patients and family members throughout Italy were involved, creating a network of aware and informed patients.
In 2020, while Italy was facing the Covid-19 health emergency, AICARM (Italian Cardiomyopathy Association) created an innovative and unprecedented project in the national panorama: the Courses for Expert Patients in Hereditary Myocardial Diseases.

Obesity is one of the major public health challenges of our time. It is associated with numerous chronic diseases, such as type 2 diabetes, cardiovascular disease, hypertension, and some types of cancer. It can also significantly impact quality of life, mental health, and self-esteem. Despite efforts through diet, exercise, and lifestyle changes, many people find it difficult to lose weight sustainably. In recent years, the arrival of new drug therapies has offered new hope. Among these, anti-GLP-1 drugs stand out, which are revolutionizing the treatment of obesity.

The AICARM webinar series continues with an in-depth look at how to best experience summer with cardiomyopathy. The webinar on June 26 aims to calmly investigate the possible critical issues that summer and vacations entail: how to best deal with the heat or altitude or long plane trips, as well as the fundamental importance of proper hydration. These will be just some of the topics covered during the event, leaving room for questions from participants as usual.
We remind you that all webinars can be consulted online on the AICARM website.

On Friday 27 September, the “Pazienti Esperti” course dedicated to hereditary myocardial diseases will be held in Ragusa Ibla, an educational initiative to delve into the diagnosis, therapies and management of these pathologies in a clear and accessible way.
The event, with a limited number of participants, will be open to a maximum of 80. Registration will open on August 25, 2025.

On May 15, the project “Vittoria Comunità Cardioprotetta 2025” was presented in Vittoria in the province of Ragusa, an initiative created to spread the culture of first aid and promote the use of defibrillators, with the aim of making the city safer and more prepared for cardiac emergencies.
The idea, proposed by Dr. Gaetano Giarratana, a retired anesthetist, was welcomed by Mayor Francesco Aiello and involved a large network of volunteers, doctors, law enforcement, professionals and associations such as Confcommercio and Galleria Marchi. The presentation was attended by AICARM's vice president Valerio Pelini and councilor Marigrazia Catania, demonstrating the importance of collaboration between institutions and healthcare organizations.

A FAD course entitled “Cardiomyopathy Time Trail” is now available online, created under the scientific responsibility of Prof. Lia Crotti of Milan. The course accredited with 3 ECM credits is aimed at healthcare professionals: cardiologists, geneticists, internal medicine doctors, radiologists, nurses and cardiovascular technicians.
Speakers include Dr. Silvia Castelletti and Dr. Angela Gammarano from Milan and Prof. Franco Cecchi, Dr. Francesca Girolami and Prof. Pierluigi Stefàno from Florence.

AICARM is joining this month of June in the awareness campaign on Cardiomyopathies, promoted by Global Heart Hub, to which AICARM is affiliated.
Through various publications on social platforms, the #thinkcardiomyopathy campaign aims to draw attention to the importance of recognizing the signs and symptoms of Cardiomyopathy and keeping in mind cardiac events that have occurred in the family.