Today, and for the first time in Berlin, the seventh edition of UnoSguardoRaro – Rare Disease International Film Festival – the film festival that focuses the spotlight on the stories of those living with a rare disease, awarding the best short and feature films. After the inauguration, the event will move to Rome for 7 dates – from 13 to 20 November – and will then close in Milan on 22 (here the program). Also competing are shorts with Neri Marcorè, Leo Gullotta, Renato Carpentieri and Massimo D’Apporto. The public can also vote by connecting to the site www.unosguardoraro.tv.
Stefania, Marco, Francesco, Nicoletta, Lorenzo, Dino and Anna are former patients of the Oncological Orthopedics of the Regina Elena National Cancer Institute in Rome. Here they decide to return, as volunteers in the ward that saw them hospitalized for a neoplasm of the musculoskeletal system: they want to help those who find themselves facing the same battle for life that they too had to face a few years earlier. Chiara, on the other hand, is a promising actress, whose career is suddenly upset by Ménière’s syndrome (an ear disorder that causes dizziness, nausea, tinnitus and hearing loss): to overcome the severe depressive state into which she has slipped , she will need to make sense of what is happening to her. While Greta is a little girl suffering from spinal muscular atrophy (SMA), who every night she makes her mother read her favorite story about her, that of a brave and always smiling princess. These and other stories are at the heart of the video works.
Rare diseases, how to cut costs for advanced therapies
by Anna Lisa Bonfranceschi
Making invisible life stories visible
The experience of a rare disease, of those who live a different existence, of those who, after the first symptoms and in the face of the difficulties of having a precise diagnosis of the disease, felt lost and with the need to isolate themselves, to be recognized as people rather than patients, disabled or sick, with their own emotions and desires: the festival tells all this, and becomes an occasion in which to bring out the needs, difficulties and fears that are faced with disability and diversity. “The cinema becomes a powerful tool capable of making real the conditions of illness often known only in an abstract and stereotyped way, underline the organizers. On the screen there are stories of lives that travel on different tracks, which deal with everyday life using transversal skills and creativity, because what for some is simple and natural, for others can be very complex “.
A withdrawal at birth and you can heal from Sma
by Letizia Gabaglio
The numbers of rare diseases
Worldwide, over 300 million people are living with one of the 8,000 rare diseases in existence today. On average, they affect one person for every 2 thousand inhabitants. The estimate in Italy is over 2 million people, of which 1 in 5 is under the age of 18. The cause is genetic in 80% of cases and multifactorial in the remaining 20%. Many are present from birth, others can manifest themselves in adulthood. Often, people with one of these diseases find it difficult to carry out simpler daily activities and to relate to others. Disability can in fact affect the intellectual, psychic, motor, communicative-relational, behavioral and sensory spheres (especially hearing and sight). The therapy is only decisive for some of them; for many, however, the treatment remains supportive, based on physical, mental and rehabilitation programs.
Progressive ossifying fibrodysplasia, this is how the disease behaves
by Valentina Guglielmo
The 2022 edition of the Festival
The works in programming at the festival are 50 and come from 35 countries, including Iran, the United States, Canada, Iraq, Turkey, France, Germany and Italy. These are short films, docufilms and animated shorts selected involving independent directors, production companies, students from film schools, patient associations, scientific societies, the world of cinema and healthcare. The competing sections are 3: Play, in which national, international, animation and documentary shorts compete, Patient Advocacy, dedicated to the third sector communication, the world of associations and public communication in health, and Lab, the section on creative writing and for cinema. This year, moreover, for the first time in the competition there will also be feature films. “With the new sections we have been able to double screenings and awards. Compared to the past, today in fact many more short films and stories find their space within the event – explains Claudia Crisalfo, Artistic and Creative Director of the Festival – Every short film, every story that participates in our festival demonstrates that people with rare diseases , who live with a disability or, simply more fragile, are an integral part of our society and need their space ”.
The stages in Italy
Several appointments in Italy to attend the projections in the competition. In Rome it will be possible on November 13th at the Casa del Cinema, on the 14th at the Goffredo Mameli Library, on the 15th at the Policlinico Gemelli Cinema Hall in collaboration with MEDICINEMA, on the 16th at the Istituto Cine Tv R. Rossellini, on the 18th and 19th again at the Casa del Cinema for the screening of the finalist works and on the 20th for the awards. The final stage will instead be on 22 November in Milan at the Niguarda Hospital Cinema Hall, where the best short films participating in the various editions will be screened.
The prizes up for grabs
More than 20 prizes up for grabs for this edition. In addition to the historic USR-HEYOKA awards on the theme of inclusion and empathy, USR-PA SOCIAL on communication projects in healthcare and USR_FERPI on the works of third sector communicators, there are three more: the USR-Associations, in collaboration with UNIAMO FIMR onlus, to reward the works carried out by the world of associations, the USR-Telethon to open the doors to the paths and successes of research, and the USR-O.Ma.R. to be assigned to a television drama on the theme of rare and complex diseases. A quality jury, made up of film and television professionals, representatives of the rare disease community, the world of communication, sport, health and education, will select the finalists and winners for each category. This will be joined by the popular jury with its votes cast online.