Training course for expert patients in hereditary myocardial diseases 2023
AICARM APS training courses Florence 2023

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.

Prof. Franco Cecchi
President of AICARM APS
Dr. Maurizio Pieroni
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
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
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
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
14:20 Myectomy and mitral plastic surgery for the treatment of obstructive hypertrophic cardiomyopathy
Pierluigi Stefano
14:40 Septal alcoholism. Heart transplant
Frank Cecchi
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

Frank Cecchi
Frank CecchiCardiologist
Maurice Pieroni
Maurice PieroniCardiologist
Gwendolyn Rossi
Gwendolyn RossiPsychiatrist Psychotherapist
Frances Girolami
Frances GirolamiGeneticist
Valerio Pellini
Valerio PelliniAICARM Vice President

 Scientific program and modules

You can download the following documents in PDF format:

  1. Scientific program of the training course Expert patients in hereditary myocardial diseases (preliminary)
  2. Privacy policy form

The course is financed with the contribution of:

CR Florence Foundation

and with the unconditional contribution of:

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.

The registration procedure involves completing and sending the form below Inscription Form and acceptance of data processing after having read the  Privacy Policy.

Registrations are closed

CR Florence Auditorium - 2021
CR Florence Auditorium – 2021
Florence training course flyer 2023
Florence training course flyer 2023

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