Introduction
We are pleased to announce that the next “Patients experienced in hereditary myocardial diseases" will be held Saturday 25 November at the 'Auditorium of the CR Firenze Foundation, via Folco Portinari, 5 – Florence.
A course will also be held Cardiopulmonary resuscitation for family members of patients suffering from Cardiomyopathy. The course will be held at the headquarters of AICARM APS, Via dello Studio, 5 – Florence which is located a few hundred meters from the Auditorium of the CR Firenze Foundation.
During the course for Expert Patients, fundamental topics will be covered regarding the heart and hereditary diseases of the heart muscle, the importance of genetic counseling, the psychological implications of diagnosis and therapies, recommendations for physical activity and sports fitness , and essential information on arrhythmias in cardiomyopathies. Pharmacological therapy of cardiomyopathies and specific surgical procedures such as myectomy and mitral plasty will also be discussed. One segment of the course will focus on living with cardiomyopathy. Furthermore, we will talk about AICARM, with a focus on its training and information activities and future projects. Ample space will be given to discussion and questions, allowing for fruitful interaction between speakers and participants.
The expert patient
The definition of Patient, according to the FDA (USA) is: any person with, or at risk of, a specific health condition, whether or not they receive therapy to prevent or treat that condition. The concept of "experienced patient"Was expressed in 1985 by Prof. David Tuckett, of the University of Cambridge (GB), who stated that medical treatment would have been more effective if doctors had considered patients as experts in their own pathologies. By themselves, the patient adds the perception of his own pathology, the changes that occur during the therapies, his skills, in close relationship with his doctor and with all the other health professions involved. He can also interact with other patients to share experiences.
The formation of the "experienced patient" of Hereditary diseases of the myocardium it also derives from the need for a new modality of interaction between doctor and patient, which takes into account the increased cultural level, the technological innovations that allow the dissemination of scientific information, and the sharing of diagnostic and therapeutic choices which is now constantly provided for in the Guidelines of the International scientific societies (Shared decision making). It is also expected to participate in the new operational and collaborative models between all the parties involved, in a process of mutual enrichment of knowledge, including the research and development of new drugs, with pharmaceutical companies and regulatory bodies (AIFA) in specific pathologies. .
The AICARM Association is convinced that it is necessary to contribute to the formation of the "experienced patient" of Hereditary diseases of the myocardium.
President of AICARM APS
President of the AICARM APS Scientific Committee
Location of the course
Auditorium of the CR Firenze Foundation
Via Folco Portinari, 5
50122 – Florence
Website: CR Florence Foundation
Map and directions
Program of the work course for Expert Patients
08:30 | Opening of the secretariat and registration of participants | |||||||||||||||
08:50 | Inauguration of the course and greeting to the participants | |||||||||||||||
Frank Cecchi, Valerio Pellini |
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Moderators: Franco Cecchi, Iacopo Olivotto | ||||||||||||||||
09:00 | The heart and hereditary heart muscle diseases: causes, presentation and clinical course. How to distinguish the different shapes | |||||||||||||||
Maurice Pieroni |
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09:30 | What is genetic testing of cardiomyopathies and the importance of genetic counseling | |||||||||||||||
Frances Girolami | ||||||||||||||||
09:50 | Discussion | |||||||||||||||
10:10 | The psychological consequences of the diagnosis, of the proposed therapies for patients and their families. Any recommended actions | |||||||||||||||
Gwendolyn Rossi |
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10:30 | Discussion | |||||||||||||||
10: 40 - 11.00 |
Coffee break | |||||||||||||||
11:00 | Recommended physical activity and quality of life; usefulness of the cardiorespiratory test; the new recommendations for sports fitness. | |||||||||||||||
Moon Cavigli | ||||||||||||||||
11:20 | Contraception and pregnancy | |||||||||||||||
Laura Angeli | ||||||||||||||||
11:40 | Discussion | |||||||||||||||
12:10 | Arrhythmias in cardiomyopathies: what you need to know. Tools and procedures to treat arrhythmias (PM, transvenous and subcutaneous ICD, CRT; ablation) What they are and how they are used. The utility of remote monitoring | |||||||||||||||
Maria Grazia Bongiorno | ||||||||||||||||
12:40 | Discussion | |||||||||||||||
13: 00 - 14.00 |
Light lunches |
Moderators: Maurizio Pieroni, Alessandra Fornaro | ||||||||||||||||
14:00 | Old and new drugs for the different forms of cardiomyopathy | |||||||||||||||
Frank Cecchi |
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14:20 | Myectomy and mitral plastic surgery for the treatment of obstructive hypertrophic cardiomyopathy | |||||||||||||||
Pierluigi Stefano |
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14:40 | Septal alcoholism. Heart transplant | |||||||||||||||
Frank Cecchi |
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14:50 | Discussion | |||||||||||||||
Moderators: Marco Bruscaglioni, Paolo Palma, Augusto Marinelli, Katia Baldini | ||||||||||||||||
15:10 | Living with Cardiomyopathy: the experience of the book “The Big Heart” | |||||||||||||||
Francesca Musso, Cavaliere Concetta, Primo Botti | ||||||||||||||||
15:40 | AICARM activities for patients and their doctors; participation in Global Heart Hub and ERN Guard future projects | |||||||||||||||
Valerio Pelini and Annalisa Gebbia | ||||||||||||||||
16:00 | Discussion | |||||||||||||||
16:30 | Summary of the course and closing of the works | |||||||||||||||
Frank Cecchi | ||||||||||||||||
Program of the Cardio Pulmonary Resuscitation course
Cardiac arrest is an event that can have dramatic consequences, including the risk of loss of life. However, with Cardiopulmonary Resuscitation (CPR) it is possible to save the lives of those who are victims of cardiac arrest and, by acting promptly, reduce the possible consequences. This simple procedure, which can be performed by anyone, is essential to be carried out as soon as possible, i.e. before the arrival of the medical staff who will carry out advanced resuscitation for subsequent transport to hospital.
The CPR course for family members of patients with cardiomyopathy begins with a general theoretical introduction and continues with the instructor demonstrating CPR maneuvers and the use of an automated external defibrillator (AED). Subsequently, each participant is invited to perform CPR maneuvers on a dummy and to use a device that simulates the behavior of a real automatic external defibrillator (AED). The course requires each participant to repeat all the maneuvers more than once in order to memorize the procedures well. It is therefore recommended to participate in the course in comfortable clothing, which does not create difficulties in carrying out the required manoeuvres.
08:30 | Opening of the secretariat and registration of participants | |||||||||||||||
08:50 | Inauguration of the course and greeting to the participants | |||||||||||||||
Paolo de Cillis, Dr. Primo Botti | ||||||||||||||||
09:00 | Introduction to the management of cardiopulmonary emergencies in patients with cardiomyopathy | |||||||||||||||
Dr Primo Botti | ||||||||||||||||
09:10 | Discussion | |||||||||||||||
09:20 | Theoretical course of Cardio Pulmonary Resuscitation | |||||||||||||||
Paul de Cillis | ||||||||||||||||
09:50 | Discussion | |||||||||||||||
10:00 | Practical course of Cardio Pulmonary Resuscitation and use of the AED defibrillator | |||||||||||||||
Paul de Cillis | ||||||||||||||||
11: 10 - 11.30 | Coffee break | |||||||||||||||
11:30 | Practical course of Cardio Pulmonary Resuscitation and use of the AED defibrillator | |||||||||||||||
Paul de Cillis | ||||||||||||||||
12:50 | Discussion and conclusion of the works | |||||||||||||||
13: 00 - 14.00 | Light lunches | |||||||||||||||
TEACHERS
Scientific program and modules
You can download the following documents in PDF format:
COURSE ENROLLMENT
Registration is compulsory and free and can only be done online by filling out the appropriate form available on the AICARM website on the course presentation page. It will be possible to register up to 3 days before the start date of the course and in any case until all available places are filled.
Please note that the course, although free, involves an organizational cost, therefore it is recommended to those enrolled presence and punctuality.
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