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THE BIG HEART

The Big Heart is a book that helps to understand and empathize with the world of cardiomyopathies.

The big heart

There is pain, yes, and a lot of reality. Along with a great desire for rebirth and a cry of hope that reassures us.

You have been given a diagnosis of cardiomyopathy, and now?

Cardiomyopathies are still little known diseases and each case is different from the other. Today there are effective therapies that have been shown to improve symptoms, prevent or resolve complications, and increase survival and quality of life for the majority of patients with cardiomyopathy..   AICARM is a community of patients and healthcare professionals, which promotes the sharing of knowledge on new opportunities for the diagnosis and treatment of cardiomyopathies.

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Answers to frequently asked questions about symptoms, tests, complications and much more.

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What lifestyles, nutrition and physical activity are recommended or recommended in case of cardiomyopathy.

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If you need clarification or need help, contact our Hearts in Listening cardiomyopathy helpdesk

Hearts Listening

The latest news and discoveries for the therapy of Cardiomyopathies.

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Read the experience of Florence which also gave birth to AICARM and the stories told by some assisted patients.

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Il Cuore Grande talks about it on RAI 2 at "Tutto il bello che c'è"

In the Rai2 program - "Tutto il bello che c'è" - on 7 September 2023, the book "The big heart - Stories of women and men facing the challenge of cardiomyopathies" was discussed. The program, hosted by journalist Silvia Vaccarezza, discussed the objective of contemporary medicine to put the patient at the center of its activity. Here the news:

Il Cuore Grande talks about it on RAI 2 at "Tutto il bello che c'è"

AICARM NEWS

2703, 2024

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.

2704, 2024

Risk assessment of beta-blockers in pregnant women with cardiomyopathy

Therapy during pregnancy involves the use of various drugs including the beta-blocker family, used in the treatment of some cardiomyopathies, cardiac arrhythmias and arterial hypertension. They are not responsible for an increase in the risk of birth defects, so in most cases pharmacological treatment during pregnancy is not only not contraindicated, but is absolutely recommended to maintain good clinical compensation of Cardiomyopathy, of fundamental importance for the regular progress of the pregnancy itself. In any case, management of these pregnancies by a multidisciplinary group that includes specialists in cardiology, obstetrics, obstetric ultrasound and echocardiography, perinatal toxicology, paediatrics is indicated.

2604, 2024

Procreation and physical activity in the foreground at the course for expert patients

The Milan course for Expert Patients in Hereditary Myocardial Diseases on March 23, 2024 was well attended. Those present created an interactive and collaborative environment. The exchange of information and experiences on crucial topics such as hereditary diseases and genetic counseling, arrhythmias and drug therapy is particularly useful and appreciated. Also in the foreground are issues related to contraception and procreation, aspects of vital importance that directly involve women, families and couples

2604, 2024

Comment on the genetic survey (published in the March 2024 Newsletter)

We publish the comment of Dr. Francesca Torricelli, geneticist and former director of the Genetic Diagnostic Unit of the Careggi University Hospital, relating to the results of the survey on the availability of genetic testing at the main Italian Medical Genetics laboratories of the NHS for patients with Cardiomyopathies published on Aicarm News of March 2024.

2203, 2024

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.

2103, 2024

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

2103, 2024

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.

Cardiomyopathy help

Hearts Listening is the cardiomyopathies help desk carried out by our expert and trained volunteers who, through listening, discussion and sharing of experiences will provide you with personalized support to better deal with your Cardiomyopathy experience or that of a family member.

You can speak to an operator by calling 055 06 20 128 Tuesdays and Thursdays from 15pm to 18pm. On other days you can leave a message on the answering machine or send a request using the appropriate form: inquiry form.

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