di Paul Palma
In 2023 AICARM organized four training courses for patients expert in hereditary myocardial diseases: Viareggio, Arezzo, Rome and Florence. Two training courses on cardiopulmonary resuscitation and use of the defibrillator were also held concurrently in Florence and Arezzo, the latter aimed at family members of patients suffering from cardiomyopathy. These courses saw the participation of approximately 200 people.
For AICARM it is a source of great pride and satisfaction to see so many people, coming from all over Italy, who reserve an entire day, and some even more, to be present at our courses. The day is very busy, it generally starts at nine in the morning and continues until four in the morning with a succession of authoritative speakers who, after their speech, make themselves available to answer questions from the public and delve deeper into the topic in a that everyone can benefit from it.
Although the topics covered are challenging to follow for a person who does not have medical skills, we observe special attention in the room because, before our courses, cardiomyopathy had never been talked about like this. Patients want to know, to know the particularities of their disease, what is new about available treatments, what is the most appropriate lifestyle, what are the impacts of the diagnosis on their loved ones. Knowing helps you live better, understand the therapeutic options proposed by doctors and make a truly shared decision on the most suitable therapeutic path at that moment and in that condition.
2024 will see AICARM still committed to disseminating knowledge on cardiomyopathies, we will organize other courses for expert patients during the year. However, we have seen that there is a growing demand for knowledge about cardiomyopathies. And providing answers with in-person courses is not enough to cover patients' requests and, for this reason, next year AICARM will combine the in-person courses with other training activities carried out online.
Already this year we have organized two webinars, the first on genetics applied to cardiomyopathies and the second posed the question of whether cardiomyopathies were really such rare diseases. We were able to verify that there was broad support for these initiatives and good participation, we are now all used to using these communication tools which have had a notable development during the pandemic period. We will thus be able to reach more and more patients and involve the most authoritative experts in cardiomyopathy in these meetings, leveraging the convenience of access and the reduced commitment of all participants.
During 2024 we will also prepare a series of video recordings made with the participation of experts in cardiomyopathy. They will be video recordings with an informative nature but with precise and verified information because they were created by competent professionals with great experience in the diagnosis and treatment of these diseases.
There are really big news for 2024; we are very happy with what we have achieved to date, but we want to move forward and increasingly improve our training offer for patients with cardiomyopathy and their families. So, stay in touch with us because we will be in touch soon after the holidays. Happy holidays and a happy new year to everyone, and to see us all together in person and on the screen.
