A very positive 2023 for AICARM. Happy Holidays to the entire community who worked to make it great
A very positive 2023 for AICARM. Happy Holidays to the entire community who worked to make it great
Dear friends of AICARM,
2023 was a crucial year for our Association, which took on the legal personality of APS (Social Promotion Association). After four years of commitment on the part of everyone, volunteers, members, specialists, we have acquired the awareness of being an important and recognized reality and therefore an entity that can make its voice heard at any level, medical, scientific and political, national and international.
To achieve this result we started from a widespread training action that was not only theoretical but also practical, aimed at enabling patients and family members to cope with any emergency situation. AICARM has grown thanks also to the attention we have dedicated to information and communication which are the lifeblood that nourishes and unites our community of doctors and patients.
I will mention some aspects of our activity this year that justify our pride. Courses for expert patients have taken on a regular basis throughout Italy and are registering an ever-increasing frequency. The success of the volume "Il Cuore Grande", to the point that there were numerous requests to continue the publications of the testimonies collected with the same editorial formula. The entry into force of the "Hearts in listening" service which allows us to process individual requests, but also to monitor the situation, for example of the main drugs, both from the point of view of pharmacological and market research. This month, for example, we asked AIFA for urgent intervention to guarantee the distribution of Nadolol, one of the life-saving drugs.
From an information point of view, thanks to the help of specialists who work with us, we have launched extensive fact sheets that clarify many doubts and help those who find themselves facing a diagnosis of cardiomyopathy. We plan to collect them in what will become a real handbook available to everyone. Along the same lines, we plan to multiply monothematic online meetings.
Thanks for the support and help. We extend our most sincere wishes to everyone for the upcoming holidays.
The President
Prof. Franco Cecchi
Shortage of the drug Nadolol: AICARM requests the intervention of AIFA
Shortage of the drug Nadolol: AICARM requests the intervention of AIFA
The shortage of Nadolol in pharmacies is increasingly worrying doctors and patients and for this reason AICARM APS has decided to contact the director of the Italian Medicines Agency Domenico Di Giorgio to request urgent intervention. In a letter sent on 4 December 2023, President Franco Cecchi, together with the pharmacologist Alessandro Mugelli, asked AIFA to take action to ensure the availability of Nadolol in pharmacies (including by importing it from abroad) and to request its production from the Institute Military Pharmaceutical of Florence.
Nadolol deficiency
Green light for Mavacamten: the compassionate use phase begins
Green light for Mavacamten: the compassionate use phase begins
Mavacamten is the first approved drug of a new class of drugs, which reduce the activity of "cardiac myosin", a protein fundamental for the contraction of heart cells, which plays a decisive role in creating obstruction to the outflow of blood left ventricle in most patients with hypertrophic obstructive cardiomyopathy. A few weeks ago, the activation of the Compassionate Use Program was officially published on the AIFA website.
Success of the Cuori in Ascolto service: the answers to patients that the web and social networks cannot give
Success of the Cuori in Ascolto service: the answers to patients that the web and social networks cannot give
To help people diagnosed with cardiomyopathy, AICARM has activated a listening desk managed by volunteers and experts: Cuori in Ascolto. AICARM has trained a group of volunteers who, in addition to being carriers of a cardiomyopathy themselves, have acquired basic knowledge on the diagnosis, the different therapies and the pathogenesis of cardiomyopathies. I am able to actively listen to the patient or a family member and establish an empathetic relationship, creating contact between two people who share similar problems.
AICARM courses: great demand, soon also online training activities
AICARM courses: great demand, soon also online training activities
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.
Florence Cardiopulmonary Resuscitation Course
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