The AICARM APS association – Italian Association of Cardiomyopathies – was born in Florence in 2019 (AICARM Onlus). It is an association of volunteers, patients, doctors and nurses that provides support to patients with Cardiomyopathy and their families, promotes training and the dissemination of scientifically correct information and supports scientific research on Cardiomyopathies.
AICARM was born in Florence because it was in this city that, since 1972, observations on the first patients began, and the foundations were laid for the establishment, at the beginning of the 2000s, of the current Cardiomyopathies Unit at the AOU of Careggi - Florence . AICARM obtains legal recognition with the registration in the Tuscan regional register of private legal entities under no. 1130 in 2020. In 2023, the procedure for applying for registration in the Single Register of the Third Sector (RUNTS) was launched which, upon its completion, will lead to taking the name AICARM APS - Italian Cardiomyopathy Association.
The mission of AICARM consists in informing and educating the patient suffering from cardiomyopathy so that he becomes an aware protagonist of his own therapeutic choices, supporting him in difficult periods involving his family if appropriate, selecting points of reference for clinical and therapeutic assistance, collaborating with institutions to change assistance and the recognition of rights to patients affected by cardiomyopathy for the better, to help scientific research, to encourage the teaching of cardiomyopathy knowledge to doctors and healthcare professionals. The training and dissemination of medical-scientific information are carried out under the supervision of the AICARM Scientific Committee which is made up of authoritative medical specialists of national and international fame.
AICARM promotes the shared decision-making process between doctor and patient in a logic of conscious participation of the patient in the proposed therapeutic choices. Patient training is a necessary component to achieve this goal and with this aim AICARM regularly schedules training courses for "expert patients". The first course was held in Florence in November 2021 and, given the interest of the participants among patients and family members interested in acquiring more knowledge of cardiomyopathies, it continued with recurring appointments in Florence, Milan, Viareggio and, during 2023, Rome and Arezzo will also be added.
AICARM organizes courses for the management of cardiac emergencies, also in parallel with courses for expert patients, educating participants in cardiopulmonary resuscitation techniques and in the use of the defibrillator; the courses are organized for family members of patients with cardiomyopathy.
In 2022, AICARM started the service “Hearts Listening”: the help desk which, thanks to the work of volunteers and specialists, provides support and information services to patients with cardiomyopathy. If necessary, users of the service will be able to obtain psychological support and exchange views with other patients regarding their own experiences of illness and therapeutic path. Cuori in Ascolto also provides economic support to those who prove to be in obvious difficulty in supporting expenses for therapies and travel for treatment reasons in other regions. Cuori in Ascolto volunteers are also present at the outpatient clinics of the Cardiomyopathies Unit of Careggi, thanks to a memorandum of understanding signed with the Careggi AOU, to offer support to patients referred to these outpatient clinics. AICARM has signed a similar protocol with the IRCCS Auxological Institute of Milan and has an expansion program underway for future collaborations with other hospitals.
Today AICARM is an association active on a national level, with members from every Italian region, and with consolidated international relations. The information on cardiomyopathy diseases published by AICARM and updates on therapeutic novelties are a point of reference for patients who seek answers to their doubts and questions on the web.
AICARM helps patients with Cardiomyopathy through the following initiatives:
- It promotes the aggregation of patients affected by cardiomyopathy to favor the sharing of experiences
- With the "Hearts in Listening" service carried out by expert volunteers, it offers support to patients with cardiomyopathy and their families, with the possible support of expert healthcare professionals
- Disseminate information on cardiomyopathies, including those of genetic origin, regarding the epidemiology, diagnostic methods and available therapies
- It organizes periodic training courses for expert patients in order to encourage the shared decision-making process between doctor and patient
- Promotes the training of family members of patients, for the management of cardiac emergencies through the use of the automatic external defibrillator
- Raise authorities' awareness of the need to install Automated External Defibrillators (AEDs) in workplaces and schools
- Interacts with the authorities to improve assistance to patients with cardiomyopathy, and solve existing problems for the recognition of civil disability and the issue or renewal of driving permits.
- It contributes to the scientific research of Universities, IRCSS and hospitals by funding shared projects.
- It collaborates with institutions to encourage the training of doctors and specialists in the diagnosis and treatment of cardiomyopathies.