Donate 5x1000 Aicarm APS
Donate 5x1000 Aicarm APS

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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AICARM NEWS

2605, 2024

The Value of Trust: We support Aicarm with the 5×1000

In this tax return period, we would like to draw attention to an important opportunity: the destination of the 5x1000 to Aicarm, the Italian Cardiomyopathies Association. The 5x1000 donation allows all taxpayers to donate a portion of their taxes to a non-profit organization of their choice, without additional costs as it is already included in the amount paid.

2705, 2024

AICARM NEWS – May 2024

Cardiac surgery experiences in the last twenty years in Florence; a column on research into innovative drugs at institutions and pharmaceutical companies; the development of the first gene therapy for an inherited heart disease at the University of San Diego; everything you need to know about smoking. These are the themes of the May newsletter presented in the editorial of the President of Aicarm.

2505, 2024

Dialogue between a smoker and his family doctor

Adolescents and smoking, the uncomfortable conditions when smoking is often talked about as a vice, but in reality it is an addiction. The tobacco industry exerting a strong influence on politicians, WHO data says that smoking causes around 8 million premature deaths every year. Anti-smoking centers and strategies to stop smoking and electronic cigarettes which are less harmful than traditional ones, but remain dangerous. These are the main topics of the thematic sheet on smoking created by Dr. Mauro Pecchioli, built according to the “Questions & Answers” ​​format. Below are the first seven questions. By clicking on the link at the bottom of the article you can read the other 9.

2505, 2024

My experience in San Diego where new therapies are explored

At the University of California San Diego (UCSD), the first gene therapy for a hereditary heart disease was developed: Danon disease, characterized by the accumulation of glycogen, due to variants in the gene that codes for a protein necessary for the elimination of cell phone waste. The type of gene therapy developed by the researchers consists of the LAMP2B gene contained in a virus capable of entering heart cells. The encouraging results of the research have allowed the experimentation to continue and a further study on male patients with Danon disease will soon begin in Europe. The only center in Italy invited to participate will be the AOU Meyer.

2505, 2024

Myectomy and mitral plastic surgery, the most effective therapy for young patients

The Hypertrophic Obstructive Cardiomyopathy Treatment course is designed to present the impact of obstruction on the quality of life and prognosis of patients with hypertrophic obstructive cardiomyopathy. The experiences gained so far with "classic" drugs, such as beta-blockers capable of effectively and safely reducing outflow obstruction and, in some cases, postponing or avoiding surgery, will be discussed. Over the last 2 decades, cardiac surgical experience with myectomy and mitral plasty have significantly improved patients' symptoms and their prognosis. With the introduction of Mavacamten, already available for "compassionate use" for patients over 18 years of age, and perhaps Aficamten in the future, there are prospects for long-term treatment, which currently makes it more suitable for elderly patients and in the future, perhaps, also in young patients, in whom cardiac surgery currently remains a fundamental solution.

1805, 2024

Gene therapy for hypertrophic cardiomyopathy, what's new

Cardiomyopathies are a group of diseases that affect the heart muscle, causing impaired function of the heart muscle and even dangerous complications. Despite the efforts of medical research, to date there is no definitive cure. Research is also focusing on gene therapies that aim to correct the genetic mutations underlying some forms of cardiomyopathy. Informing correctly on the one hand avoids generating false expectations in patients, while on the other it supports funding and efforts of the scientific community. For these reasons AICARM inaugurates a new column which will present the news and developments for the treatment of cardiomyopathies. We will present works that come from institutions and pharmaceutical companies, both Italian and foreign, always with authority and independence from the market, and in favor of patients with cardiomyopathy and their doctors.

2704, 2024

AICARM NEWS – April 2024

The Assembly of April 18th represented an important step in the growth of our Association. The first annual report for 2023 has allowed us to define an organic and complete picture of the results achieved which fill us with great satisfaction. All data relating to the meeting can be consulted online. This newsletter reports the results of the course for expert patients in Milan, continues the column relating to drugs and publishes Dr. Torricelli's comment on the genetics survey already published in AICARM NEWS in March.

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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