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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.

March 27 2024|
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AICARM NEWS – March 2024

the themes we propose in the March newsletter open the way to new lines of intervention in our commitment to providing all of you with in-depth and up-to-date information. The article on the "placebo and nocebo effect" kicks off an editorial line on the crucial topic of drugs. We have seen in recent weeks how important the experimentation and arrival of new generation products is, as well as their history and their full availability to patients. As regards Nadolol, for example, the shortage period for which AICARM Aps intervened several times has ended and the drug is once again available in pharmacies.

March 22 2024|
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Davide Antoniucci: dedication to patients and innovation

The memory of Professor Franco Cecchi The Director of the Cardiology Department of the Careggi Hospital for over two decades, who passed away a few days ago, is responsible for the introduction of a new technique for the treatment of patients with acute myocardial infarction

March 21 2024|
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The availability of genetic testing for cardiomyopathies in Italy

The results of a survey on the availability of genetic testing at the main Italian medical genetics laboratories of the NHS for patients with cardiomyopathies. Together with AICARM Aps, Dr. Maria Iascone (director of the Medical Genetics Laboratory of the ASTT Papa Giovanni XXIII of Bergamo) and Dr. Francesca Girolami (Cardiogenetics of the Meyer IRCCS University Hospital, of Florence). These are the most important conclusions: in most cases the test is carried out together with genetic counselling, it requires an average of 3-6 months to carry out and is always carried out with NGS technology.

March 21 2024|
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What happens when we take a drug: Placebo and Nocebo effects

Whenever a drug is used for the first time in the treatment of diseases, the patient is faced with two possible effects. The "placebo effect", i.e. a perceived or real benefit on the part of the patient who believes he is undergoing an effective treatment for his clinical condition even if the medicine does not contain active properties. It is the "nocebo" effect (from the Latin "nocere", to damage), that is, the disturbing shadow of side effects. The detailed information leaflets of medicines, the so-called "leaflets", list a long list of possible negative health effects. These fears, fueled by negative expectations, can trigger the phenomenon. The tools to overcome the problem are correct information and the relationship of trust between doctor and patient.

March 21 2024|
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AICARM NEWS – February 2024

There is important news on the drug front. Professor Iacopo Olivotto takes stock of the situation and illustrates the characteristics and status of the trials on this medicine. As regards the activity of our Association, we must note with satisfaction the strengthening of the volunteer service at the Careggi Unit. One of them, Valerio Pelini, our vice president, talks about it. The next course for expert patients in hereditary myocardial diseases will be held in Milan on Saturday 23 March.

February 26 2024|
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Mavacamten ready for “compassionate use”, perhaps in a year it will be refundable

Mavacamten and Aficamten are the two new drugs for the treatment of hypertrophic cardiomyopathy. Mavacamten has entered the “compassionate” use phase. This means that the drug is already available and can be supplied by the manufacturer for patients with hypertrophic obstructive cardiomyopathy, upon request by expert cardiologists. Aficamten is a little further behind in the experimentation process.

February 21 2024|
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Volunteers doubled in Careggi, supporting patients after the "tsunami" of the diagnosis

Aicarm operates in the context of a region that is very rich in terms of volunteering, which is an enormous social capital. At the cardiomyopathy diagnosis and treatment unit in Careggi, the number of volunteers who make themselves available to patients facing their first diagnosis or going there for a check-up is increasing. They inform them and make themselves available to them for every need. It is a service of the same nature as Hearts in Listening, but with direct human contact. 

February 20 2024|
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