AICARM publications
Annual Report 2023 – Download PDF
An act of responsibility and transparency. We present for the first time the Annual Report on the activities of the Italian Cardiomyopathy Association Aps. This is not a formal act nor just an informative document. A Report is the certification of the organizational and operational maturity of the Association and, at the same time, a communicative act that shows to all those who are part of it, the [...]
Annual Report 2024 – Download PDF
For the second consecutive year, AICARM publishes its Annual Report, a document that goes beyond simple information: it is evidence of the organizational maturity and the concrete impact of the activities carried out in 2024. Among the main projects, the Listening Hearts Service, the increasingly popular training courses, the new Heart Video Library accessible online and the BLSD courses intended for both family members and students of Milanese schools stand out. The Report is not just a list of numbers: it is a gesture of responsibility and transparency towards members, donors, volunteers and supporters. It confirms AICARM's role in promoting awareness of cardiomyopathy and in improving the quality of life of patients and their families.
Institutional profile AICARM APS
AICARM APS – Associazione Italiana Cardiomyopatie – is a national organization composed of patients, volunteers and doctors who are dedicated to supporting people affected by cardiomyopathy and their families. The Association promotes training, correct scientific dissemination and support for research.
To implant a defibrillator or not? The patient's perspective - Download pdf
The implantation of a cardiac defibrillator is a complex decision that is up to the patient alone, despite medical advice. This factsheet highlights the importance of an informed choice based on accurate information about one's cardiac condition, personal risks and implications of the procedure. Before proceeding, it is essential to carefully weigh both the benefits (protection against cardiac arrest, remote monitoring, possible pacing in case of bradycardia) and the disadvantages (inappropriate shocks, surgical complications, need for periodic replacements, limitations in daily life). The text also invites consideration of the motivations of the different actors involved in the decision-making process (doctors, hospitals, manufacturers, insurance companies) and presents a comparison between transvenous and subcutaneous defibrillators. The author also suggests that there is not only a binary choice between implanting or not implanting, but also the possibility of postponing the decision after careful consideration and optimization of therapy.
Questions and Answers on Remote Monitoring of Implantable Devices – Download PDF
The thematic factsheet provides essential and reassuring information for patients with implantable cardiac devices who use remote monitoring. It highlights the advantages in terms of early control of technical problems and arrhythmias, reduction of hospital checks and greater peace of mind in daily life. It is crucial to understand that remote monitoring is a control and warning tool, but it does not replace emergency services for urgent health problems. The practical guide offered by Dr. Bernardini aims to make patients more autonomous and aware of how this important technology works.
Genetic Testing and Counseling in Hypertrophic Cardiomyopathy – Download PDF
This thematic sheet is a useful handbook designed for those who are undergoing a genetic diagnosis process related to their cardiomyopathy. It answers the most frequent doubts about the timing, methods and meaning of genetic counseling, the reliability of the tests and what to do once a genetic mutation has been identified. Dr. Francesca Girolami, a geneticist at the Cardiogenetics laboratory of the Meyer Pediatric Hospital, has collected fifteen questions and answers for us
MRI Why, How and When: Ten Most Frequently Asked Questions from Patients – Download PDF
Nuclear magnetic resonance imaging (NMR) is a fundamental diagnostic tool for the identification and management of cardiomyopathies. This non-invasive test allows for the acquisition of extremely detailed images of the heart, essential for an accurate diagnosis and to evaluate its evolution over time. During the test, which lasts between 30 and 60 minutes, the patient is positioned inside a magnet and must follow simple instructions such as holding their breath for short periods. The use of contrast medium, injected intravenously, is crucial for verifying the integrity of the heart muscle, identifying areas of scarring, inflammation or infiltration. Modern T1 and T2 mapping techniques provide more specific information on the tissue composition of the heart through colored maps. There are important contraindications, such as the presence of pacemakers or defibrillators that are not compatible with NMR (generally those implanted before 2010), ferromagnetic metal bodies and the first trimester post-implantation. Sedation is generally not recommended because it compromises the quality of the examination, while "open" MRIs are rare and available only in selected centers for patients with severe claustrophobia or obesity. To obtain reliable results, it is essential that the examination is performed in specialized centers with personnel experienced in interpreting the results and with close collaboration between radiologists and cardiologists.
The first Italian Report on cardiomyopathies presented in the Senate
On 19 March 2024, the Report on cardiomyopathies in Italy was presented at the Senate of the Republic, entitled “Cardiomyopathies Matter. A roadmap to improve the diagnosis and care of patients with cardiomyopathy in Italy". The objective of this important event was dictated by the desire to contribute to improving the diagnosis and care of patients with cardiomyopathy in Italy, to raise public awareness and ensure that these pathologies receive the right attention from the legislator, the decision makers of the national healthcare system and information channels at European and national level.
Il Cuore Grande: twenty tales of pain and reality, of courage and rebirth
Il Cuore Grande, stories of women and men facing the challenge of cardiomyopathies: this book was born around the stories of twenty patients, or their families, who belong to Aicarm (Italian cardiomyopathy association) and wanted to tell their stories.