The success of the courses: in Ragusa, patients are the protagonists

As mentioned during the meetings, university doesn't teach how to communicate with patients. And this is precisely where one of AICARM's fundamental goals comes in: providing patients with the tools to become protagonists of their own therapeutic choices. Because an informed patient is able to evaluate which treatment option is best for them at a given time, also considering personal, family, and work life factors.

It's not about replacing the doctor, but rather to be able to understand the implications of one choice over another, to be able to interpret one's symptoms and situation. A true and informed choice, however, can only be made if the patient has the appropriate knowledge.
The courses for experienced patients are designed precisely for this purpose: to bridge the gap between the medical world and the patient world, foster equal dialogue, and give a voice and "the right to speak" to those who experience the disease on a daily basis.

The first day, organized by Aurora Giuliano – President of the Vittoria Soroptmist Club – was dedicated to the presentation of the book “Il cuore grande”, a moment that successfully intertwined the scientific dimension with the profoundly human one. Moderated by the journalist Daniela Citino the meeting saw Professor Frank Cecchi Answer questions about cardiomyopathy, the Association's values, and AICARM's activities.

But the element that made this evening truly special was the presence of Bruna and Salvatore, two patients who shared their personal stories, along with the reading of some passages from the book by the actress from Vittoria Liliana StimoloSeeing and listening to real patients suddenly gave a face to a rare disease, making an immediate impact on the participants. For many of them, invited by the Soroptimist Club Vittoria, it was likely their first experience with cardiomyopathy. An intense and moving format, it gave a concrete demonstration of how AICARM actively works for this reality, raising awareness in the area. Dr. Gaetano Giarratana Raising awareness among the assembly about the importance of cardiopulmonary resuscitation and the training philosophy behind the Vittoria Cardioprotected Community project.

The second day saw the course for experienced patients The event took place in the now established format, with speakers presenting the topics followed by a discussion period. Attendance far exceeded expectations: not only were all the seats filled, but chairs had to be added to the room, and many people remained standing from start to finish, demonstrating genuine and sustained interest. The presence of patients among the speakers was crucial in giving a voice to those who live with the disease on a daily basis, restoring balance in the dialogue with healthcare professionals.

The exchange that takes place in in-person courses is not one-way.Patients listen to doctors who speak appropriately, but at the same time, doctors benefit from their patients' perspectives, a valuable experience that enriches their professionalism in ways that universities don't teach. It's precisely this process of rapprochement, this constructive dialogue, that fosters patient empowerment and helps them gain a greater understanding of the importance of understanding their own symptoms and situation.

In parallel with the course for experienced patients, a cardiopulmonary resuscitation course was held for the families of patients with cardiomyopathy. directed by Dr. Gaetano Giarratana, and conducted with four other volunteer trainers. Once again, the results exceeded all expectations: over 30 participants signed up, extraordinary numbers that demonstrate the need and interest in these initiatives.
The organization was impeccable: after an initial shared theoretical part, participants were divided into four islands, each with a trainer and a mannequin. But the distinguishing feature was Dr. Giarratana's approach: after the plenary session, he had participants work in subgroups, constantly moving between the islands, answering questions and providing personalized advice on a case-by-case basis.

Behind the organization of the CPR course there is a precise vision which is often strongly recalled also by Dr. Giarratana: building community between patients and families. It's no coincidence that Giarratana plans to re-attend the course after six months, precisely to maintain the bond between participants and strengthen their sense of belonging to a mutual support network.
This focus on continuity and building lasting relationships is one of the distinctive elements of AICARM's approach: it's not just about imparting technical skills, but about building a supportive community where patients and families can feel less alone and more empowered.

The qualitative and quantitative success of the Ragusa experience was such that a request has already been made to repeat the initiative next year.The association expressed its full willingness to continue this journey. Participants left feeling satisfied and enriched, knowing that there is an association working effectively to give patients a voice, transforming them from spectators into true protagonists of their treatment journey.

Ragusa's experience has confirmed that in-person courses represent an irreplaceable valueIt is through direct encounters, the exchange of experiences, and looking into each other's eyes that the community of informed and active patients that is at the heart of AICARM's mission is built. A successful format that will continue to be extended to new territories, spreading knowledge, awareness, and solidarity.