Institutional Profile
AICARM APS – Associazione Italiana Cardiomyopatie – is an association of patients, volunteers and doctors that provides support to patients with Cardiomyopathy and their families, promotes training and the dissemination of scientifically correct information and supports research on Cardiomyopathies.
AICARM was born in Florence because it is precisely in this city that, in 1972, observations on the first patients began and the foundations were laid for the establishment, in the early 2000s, of the current Cardiomyopathy Unit at the AOU of Careggi – Florence.
The Association, established as a non-profit organization in 2019, obtained legal recognition in 2020, with registration at no. 1130 in the Tuscany regional register, and in 2023 it transformed into an APS with registration in the RUNTS - Single Third Sector Register - at number 15568.
Cardiomyopathies are diseases of the heart muscle, usually of genetic origin, with frequent familial transmission and different clinical expression. Although some forms are rare diseases, overall it is estimated that they are present in about 4 per thousand of the general population, and affect over 230.000 patients in Italy. Their recognition is often late, and can occur following the appearance of symptoms, adverse events or a medical check-up. This can lead to a delay in diagnosis and treatment.
Among the possible adverse events, such as arrhythmias and heart failure, the most feared is cardiac arrest, for which people affected by a form of cardiomyopathy have a higher risk than the general population. This dramatic event can happen suddenly, but thanks to Cardiopulmonary Resuscitation (CPR), and the use of a defibrillator (AED), the patient's life can be saved and the consequences of a lack of oxygenation to the brain and other vital organs can be reduced.
Mission and Activities
The first objective that AICARM sets itself is to support the patient affected by cardiomyopathy and contribute to improving his quality of life.
Patient involvement in decision-making processes related to diagnosis and treatment helps achieve optimal results in terms of both therapy and living with the disease.
AICARM has activated the telephone help desk in 2022 "Hearts Listening" aimed at patients and their families. This service, managed by volunteers with direct experience of the pathology, in coordination with expert cardiologists and specialists, managed approximately 2023 calls in 350 and over 2024 contacts in 420, offering listening, advice and support to those who have received a diagnosis and their families.
The association is committed to training patients through the “Courses for expert patients in hereditary myocardial diseases”, which since 2021 are
organized in various Italian cities. In 2024, these courses involved a total of over 400 people including patients, family members and students.
AICARM is also actively involved in spreading the culture of prevention and resuscitation techniques, organizing training courses on the use of the AED and promoting the innovative project “Cardioprotected Community”, a model for cardiopulmonary resuscitation on a territorial scale that aims to rapidly converge on the patient, while waiting for the ambulance, a volunteer trained in CPR and a defibrillator.
Governance and Organization
AICARM is managed by a Board of Directors composed of 7 volunteer members, chaired by Prof. Franco Cecchi, cardiologist and former university professor recognized as one of the leading Italian experts in cardiomyopathies. At his side are the Vice President Valerio Pelini (former Director General of the Tuscany Region), the Honorary President Prof. Augusto Marinelli (former Rector of the University of Florence) and four other directors with experience and skills in the managerial and administration field.
The association has a high-profile Scientific Committee, chaired by Prof. Maurizio Pieroni and composed of nationally and internationally renowned specialists in cardiology and genetics, which provides advice on the association's activities and guarantees the scientific rigor of the information disseminated.
The membership base is constantly growing, with a constant increase in the number of members (288 in 2024) and volunteers (16 in 2024), demonstrating the role of AICARM as a reference association at a national level.
Communication and Reputation
2024 was the year of consolidation of AICARM's communicative identity, characterized by a balance between scientific rigor and attention to the patient.
The association's recognition has increased and made it easier to reach those who need support.
The portal aicarm.it It has established itself as a non-hospital national reference point for information on cardiomyopathies, with thousands of monthly visits from all over Italy.
The newsletter AICARM NEWS, with over 900 subscribers, represents a bridge between the knowledge of experts and the experiences of patients. In 2024, 11 issues of the newsletter were published, also enriched by four thematic cards for in-depth analysis on key topics for the management of cardiomyopathies.
In 2024, AICARM launched on its website the “Video Library of the Heart”, a multimedia archive of great scientific and informative value that offers authoritative content on diagnosis, therapies and lifestyles for patients with cardiomyopathy, created thanks to the contribution of 10 expert specialists.
The association has enjoyed extensive coverage in the national media, with publications in prestigious newspapers such as Il Sole 24 Ore, Corriere della Sera, Rai News and dedicated features on national television networks.
Collaboration and Network
AICARM works in close synergy with the medical-scientific community and collaborates with scientific societies such as SIC and ANMCO. At international level, it is part of ERN GUARD-Heart, the European Reference Network for rare and complex heart diseases, and of the Global Heart Hub, a global alliance of associations of
cardiac patients.
A particularly significant result was the participation in the drafting of the first “Report on cardiomyopathies in Italy” (Cardiomyopathies Matter), presented in the Senate in March 2024, which proposes a roadmap to improve early diagnosis, integrated care and training, including the creation of a National Cardiomyopathies Network.
Financial Resources
AICARM is financed through membership fees, donations (finalized and otherwise), funding for specific projects and the 5×1000 contribution.
Fundraising has seen steady growth since the association was founded, thanks to the ability to carry out concrete projects that respond to patients' needs.
In 2024, the association's revenues were mainly used in four areas: patient education and scientific dissemination (50%), general coordination (30%), patient support and aggregation (11%), and scientific research support (9%).
For 2025, AICARM has adopted a Program Plan with 24 approved projects, divided into five main areas: Training and Information; Patient Support and Aggregation; Research Support; Network Strengthening; General Management.
Among the most significant initiatives are the expansion of the territorial network, the dissemination of new information content also through a series of webinars, the strengthening of the “Cuori in Ascolto” service, and the financing of scientific research projects in collaboration with specialized hospital and university centers.
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