"Narrative Medicine and Rare Diseases," Aula Pocchiari Istituto Superiore di Sanità, Rome, June 26, 2009.

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. Further information is available here: http://www.iss.it/.