“Participatory science to improve the quality of life of people with rare diseases” is the title of the event to be held on Monday 27 February (10.00-13.00) in the Sala Zuccari in Palazzo Giustiniani (Rome), organized by the Higher Institute of Health Care – National Center for Rare Diseases (CNMR) and the Consortium Uniamo as part of the Rare Disease Day 2023 celebrations.
This was followed, again at Palazzo Giustiniani (2:30 – 5:30 p.m.), by the “Science and Art Together for Rare Diseases” event.
The first event, as indicated in the presentation, “intends to evaluate the results of the homogeneous project”Participatory science to improve the quality of life of people with rare diseasesDesigned and coordinated by Cnmr and supported by the Ministry of Health.
The Conference will open with a corporate greeting from Francesco Zavini, Senator and Chairman of the Tenth Standing Committee. Silvio Brusaferro, President of the ISS; Sergio Ivecoli, General Director of European and International Communications and Relations, Orfeo Mazzella, Senator, and Marco Celano, Acting Director of Cnmr. A rich program of interventions will follow, which will be moderated by Domenica Tarocio, Creator of the Participatory Science Project and former Director of Cnmr, and Annalisa Scopinaro, President of Uniamo, who will lead to the clarification, by the same authors, some of the proposals reached and positively evaluated by the multidisciplinary committee of the project.
The afternoon event, “Science and Art Together for Rare Diseases”, organized as part of the activities of the International Space Station’s Health Humanities Laboratory, will see, among others, the award ceremony for the 15th edition of the literary, artistic and musical book “Pegasus flight“Which this year sees the theme of peace as its leitmotif. After the greetings of Silano and Mazzella, the works will be presented by Amalia Egle Gentile, Head of the Cnmr Health Humanities Laboratory, and Annalisa Scopinaro up to the virtual exhibition. He will direct and coordinate the award ceremony with a committee Judging is Domenico Tarusio, creator of “Il Volo di Pegaso” 15 years ago, while Ina Rogatchi will take care of another award: the Rogatchi Foundation Helicon Prize for Aspiring Artist.
Both events will take place in mixed mode: in attendance and broadcast on Senate channels.
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