News on the latest discoveries and experiments for the treatment and diagnosis of Cardiomyopathies.

An international network against rare diseases

Be careful not to consider rare diseases as marginal. This is the risk that, according to Professor Giuseppe Limongelli, director of the Rare and Hereditary Cardiovascular Diseases Unit at the Monaldi Hospital in Naples, is becoming concrete in "a healthcare system that is increasingly turning towards the private sector". The goal is to apply the National Rare Disease Plan and Law 175, so that no patient is left behind, explains Limongelli who recounts the path taken to create the team dedicated to rare genetic heart diseases.

December 10 2024|

Research and training, the Milan group

Communication and support for patients were the first commitment of the Milanese volunteers. Then the investigation into the management of the genetic test, its availability, how it was proposed and how the data was presented. And then the work on the topic of psychological support. And many training courses for expert patients that recorded a great participation

October 22, 2024|

Innovative surgical therapies for all patients

The course on Obstructive Hypertrophic Cardiomyopathy, organized by AICARM Aps, saw the participation of the best Italian specialists. HCM surgery has made significant strides towards minimally invasive techniques, which reduces trauma and allows patients to quickly return to their daily lives. Clear information becomes important to encourage acceptance of the intervention. The establishment of a register of innovative therapies has been announced.

July 23 2024|

Anticoagulants and antiaggregants in pregnancy

In women with different types of cardiomyopathy and who take antiplatelet or anticoagulant drugs, there is a risk of maternal or fetal hemorrhages and fetal malformations. For those who decide to embark on a pregnancy it is therefore necessary to request consultation in reference centers in order to carefully evaluate the risk and possible alternative therapy when possible. Here are some recommendations.

June 25 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.

May 25, 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.

May 25, 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.

May 18, 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.

April 27 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.

April 26 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.

March 21 2024|
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