AICARM - A pole of attraction for the Italian centers of excellence for Cardiomyopathy

You are part of the original core of Aicarm shareholders. Can you tell us the first steps of the association?

Dr. Valerio Pelini and Prof. Franco Cecchi

Aicarm was founded in November 2019 by a fairly small group of people. Franco Cecchi and Iacopo Olivotto, two cardiologists with a prestigious curriculum, launched the challenge immediately accepted by a limited number of patients who offered to collaborate personally. The basic idea is to spread and develop the knowledge of cardiomyopathies, which affect a fairly significant part of the population. This pathology has been studied at the Careggi hospital, in Florence, in a pioneering form and with scientific publications of great international importance. Today the excellence of that scientific work has been recognized and the “Cardiomyopathies Unit” was born. Our association is in continuity with this medical and scientific nucleus which attracts patients from all over Italy.

First of all, our website is a place for information and scientific dissemination for patients and family members on the subject of Cardiomyopathies. We aim to give research support and financial support to patients who need it. We also want to network the main centers of excellence at national level and act as a pole of attraction for associations similar to ours. Let me give you an example, one of the complications of this disease is the sudden death of patients who often do not know they have it. Well, there is an association that deals with these issues and we are in contact with them.

You were born a year or so, is it possible to make a first assessment?

Despite the great difficulties of this year influenced by Covid, which prevented already scheduled meetings, we are already eighty or so doctors, patients and their relatives. Month after month the adhesions grow through our site or thanks to our informative material. We have already found a prestigious location a stone's throw from Piazza Duomo, in a fourteenth-century tower that will be kept open two or three times a week thanks to our voluntary work. We had the legal recognition of the Region, which is not a foregone conclusion, and we obtained the financing of a project from the Cassa di Risparmio di Firenze Foundation. In these difficult times we cannot organize events and fundraising yet, but we will do it as soon as possible. For now we are self-financing and looking for donations on specific projects such as patient training. Awareness of the disease is a very important aspect. We would like to create an on-line desk to which everyone can turn to ask questions, questions, able to put us and them in contact.

Tell me the closest action you have on your agenda

A meeting with the regional health councilor to present some requests, including the strengthening of the Cardiomyopathies Unit of Careggi. Indeed, among the numerous aims of Aicarm there is also that of relationship with institutions.

Is there a reference model you are inspired by?

Our model is that of a voluntary association that falls within the legal framework of Italian legislation. The activity we want to carry out, on the other hand, is very similar to that of our US counterpart (www.4HCM.com): a gigantic association, created a few decades ago, which has thousands of members and looks to patients as a community to follow. always keep informed and interact with. AICARM was recently invited to join an international consortium (network) of Cardiomyopathies Associations, present in Europe, the United States and Australia, to establish contacts and joint projects.

(Interview by Laura D'Ettole)