Our dreams. Storytelling, Video and Social Laboratory for teenagers with rare and complex diseases

The Federation of Rare Infantile Diseases (FMRI) has been managing the “In-cont-Rare” service for about twenty years, a listening space aimed at patients with rare diseases and their families. An interdisciplinary team organizes both individual consultations and meetings with groups of patients’ families, also thanks to the involvement of the Interregional Network of Piedmont and Valle D’Aosta. The needs of teenagers suffering from rare and complex diseases emerge as some of the most evident. The affected young people display numerous difficul-ties in socializing with their peers, both at school and in their daily life. The need to relate and to “group together” are inherent in human nature, and meeting such needs is an essential requirement for the development of a harmonious and healthy personality, which is often lacking for these teenagers. The project stems from the desire to promote the socialization of the participants and to provide them with a personal sense of empowerment. The aim of the pro-ject, which is innovative both for the type of language used and for the direct in-volvement of the young people, is to promote the participants’ socialization and to provide them with a personal sense of empowerment. It is the first short film to be written, directed, and performed by children with rare and complex diseases.

Keywords: Audiovisual; Innovation; Interdisciplinarity; Rare disease; Narrative.

Roberto Lala , Maddalena Bisollo, Paola Chialone, Lorenza Garrino, Luca Nave, Enrico Nivolo, Claudio Zottola, Riccardo Denaro, I nostri sogni. Laboratorio di Storytelling, Video e Social per adolescenti con malattia rara e complessa in "WELFARE E ERGONOMIA" 1/2023, pp 137-141, DOI: 10.3280/WE2023-001011