Project Description

1st TRAINING COURSE FOR EXPERT PATIENTS WITH MYOCARDIUM DISEASES

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.

Simultaneously with the first course for "expert patient", a first dedicated course will be held in the headquarters of the AICARM Association, in via dello Studio 5, located a short distance from the Folco Portinari Room to family members of patients, on the theme: "Management of emergencies and theoretical and practical bases of cardiopulmonary resuscitation", which patients' relatives can enroll in.

The course is part of the project "Promoting knowledge on cardiomyopathies and assistance to affected patients".

Prof. Franco Cecchi

Dr. Silvia Favilli

Prof. Iacopo Olivotto

Dr. Maurizio Pieroni

Friday November 5

13.00 Opening of the secretariat and registration of participants

14.00 The heart and hereditary diseases of the heart muscle, causes, presentation and clinical course  Prof. Franco Cecchi

14.20 Discussion

14.40 Cardiomyopathies in the pediatric age  Dr. Silvia Favilli

15.00 Discussion

15.20 Distinguish the different forms of Cardiomyopathies in the adult

(Fabry disease and cardiac amyloidosis) Dr. Maurizio Pieroni

15.40 Discussion

16:00  Coffee break

16.10 Arrhythmias in hypertrophic cardiomyopathy: what you need to know  Prof. Iacopo Olivotto

16.30 Discussion

16.50 Old and new drugs in the treatment of cardiomyopathies  Prof. Iacopo Olivotto

17.10 Discussion   

17.30  What patients ask for Annalisa Gebbia and Matteo Pinciroli

17.40 I work in 5 separate groups on topics proposed by patients

18.30 Presentation and discussion of the themes developed by the groups

19.30  Conclusions of the day

Saturday November 6

8.30      Invasive treatments of hypertrophic cardiomyopathy

(alcoholization, myectomy, Mitraclip and valve replacement)   Prof. Franco Cecchi

8.50      Discussion

9.10       The psychological consequences of the diagnosis, limitations and any recommended interventions  Dr. Guendalina Rossi

9.30      Discussion

9.50     The professional nurse between cardiologist, patient, family members and patients' requests  Katia Baldini

10.10 Discussion

10.30 Coffee break

10.40 I work in 5 groups on the different themes proposed

11.40 Presentation and discussion of the themes developed by the groups

12.40 Course summary

13.00 Closing of the works

VENUE OF THE COURSE

Auditorium Ente Cassa di Risparmio di Firenze - Sala Folco Portinari

Via Folco Portinari, 5

50122 Florence

TO SUBSCRIBE

The course is free, but according to the COVID provisions, it is limited to 30 members of AICARM. Only members in good standing with the payment of dues and in possession of the Green Pass will be able to register.

The registration procedure involves the compilation and sending of the Application form and Privacy Policy to the following e-mail: iinfo@aicarm.it. The expected number of participants for the course Patients experienced in hereditary myocardial diseases is fixed at 30 people. Registration for the course will be accepted only if the necessary requirements are met and according to the time order of arrival of the request. Should the number of requests exceed this limit, a waiting list will be compiled. The waiting list is valid for the next course or for any places that are made vacant.

Cardiopulmonary resuscitationTwo courses on the subject are planned for the family members of the participants Emergency management and theoretical and practical bases of cardiopulmonary resuscitation. One course will be held concurrently with the two sessions of the main course. The number of participants expected to participate in each session is 10 people for a total of 20 Guests in the two sessions. Registration for the course will be accepted only if the necessary requirements are met and according to the time order of arrival of the request. Should the number of requests exceed this limit, a waiting list will be compiled. The waiting list is valid for the next course or for any places that are made vacant.

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 Scientific program and registration forms

You can download the following documents in PDF format:

  1. Scientific program of the training course for Expert Patients in hereditary myocardial diseases
  2. Registration form
  3. Privacy policy form
AICARM scientific program

REGISTRATION FORM

Aicarm Privacy Policy

TEACHERS

Katia Baldini
Katia BaldiniNurse
Frank Cecchi
Frank CecchiCardiologist
Silvia Favilli
Silvia FavilliPediatrician cardiologist
Jacopo Olivotto
Jacopo OlivottoCardiologist
Maurice Pieroni
Maurice PieroniCardiologist
Gwendolyn Rossi
Gwendolyn RossiPsychiatrist Psychotherapist

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