National Center for Rare Diseases
Domenica Taruscio
Istituto Superiore di Sanità
Via Giano della Bella, 34
00161 - Roma (I)
Phone: 06 4990 4017
Fax: 06 4990 4370
taruscio@iss.it
MEETING: NARRATIVE MEDICINE AND RARE DISEASES
The meeting will take place on 26 June 2009 in Rome in Istituto Superiore di Sanità.
This meeting aims to promote among health workers the
knowledge of narrative medicine as a functional tool in the
management of patients, with particular attention to people
with rare diseases. Rare diseases are often severe, chronic,
and disabling conditions with a low prevalence in the
population. They are difficult to diagnose and often non
treatable.
Patients and their families may have a perception of intense
isolation, alike the sense of powerlessness felt by medical and
health professionals who take care of these people. Therefore,
it strongly emerges the need to build up a strong relationship
between the affected person with a rare disease and the
health workers. Narrative medicine aims to fill the gap
between the bedside clinical knowledge of physicians (and
more in general of health professionals) and the patient's
subjective experience and to short that distance, "taking
together" both actors in the management of the disease. This
tool consists in different contributions from a number of
approaches and techniques.
The event includes the presentation of different perspectives
and methodologies in the field of narrative medicine, through
invited lectures, programmed speeches, plenary sessions and a
poster session mainly devoted to practical experiences.
The meeting is addressed to professionals in the National and
International social and health network of physicians,
psychologists, nurses, social workers, educators, lay groups
and students involved in the field of rare disease, and more in
general interested in narrative medicine. It is also particularly
dedicated to affected people with rare diseases and their
families.
Participation is free, but registration is required for all meeting participants through registration form.
The registration form, fully completed, should be printed, signed and sent by Fax to: 0039.06.49904370 by June, 21st 2009.
