Rare diseases are many and very diverse, and getting the correct diagnosis and finding a treatment can be difficult or take a long time. That is why facing a rare disease is even more challenging for patients and their families, who are often left alone. On the occasion of the rare disease day - the fifteenth edition worldwide, the eighth in Trentino - three initiatives in Trento seek to inform and raise awareness on the issue.
The mural painting "Mondo raro. L’altro come parte di noi"
On Friday 25 February at 11 am the mural "Mondo raro. L'altro come parte di noi" will be unveiled by mayor Franco Ianeselli and Elisabetta Bozzarelli, city councilor for culture. The work was painted on wall surrounding the Oratorio del Duomo in via Madruzzo in Trento, based on a project by Coordinamento trentino associazioni malattie rare in rete (the local network for rare diseases). The network brings together many non-profit associations that mainly focus on rare diseases, and is engaged in information, dissemination and awareness raising activities.
The mural, signed by Fulvio Bernardini, aka Fulber, and painted by writer Alan Vitti, aka Senka Semak, aims to use street art as a reminder of the cause beyond the annual rare disease day, in a visible and accessible place, without barriers, and is dedicated to people who live every day with a rare disease. Every element of the mural invites a reflection: Neptune represents the community, DNA is a symbol that unites different elements (research, talking, listening, suffering and hope), the profile and its shadow represent the other as part of us, while the gears of thought form important words: equity, inclusion, care, research.
Public meeting streamed from the University of Trento
On Monday 28 February citizens and students will have an opportunity to learn about rare diseases, local organizations and research conducted in the University's laboratories. The public meeting "Il dialogo raro" (the rare dialogue) will be streamed from 9.30 to 12. The event was organized by Coordinamento trentino associazioni malattie rare in rete in collaboration with the Department of Cellular, Computational and Integrative Biology - Cibio of the University of Trento with the patronage of the Autonomous Province of Trento, the Consulta provinciale per la salute, the City of Trento, the Provincial Health Care Services and Uniamo, the Italian Federation of rare diseases.
The scientific coordinators of the event are Paolo Macchi, Michela Denti, Simona Casarosa and Marta Biagioli, professors of the Cibio Department of the University of Trento. The meeting will be moderated by journalist Paola Siano. To join the chat room, register to the Zoom seminar or follow the live streaming on the Facebook page of Coordinamento trentino associazioni malattie rare in rete (https://www.facebook.com/malattieraretrentino/) or on YouTube, UniTrento - Cibio channel (from the website www.cibio.unitn.it).
A disease is considered rare when it affects less than 5 in 10,000 people. However, since there are between six to eight thousand rare diseases, patients are many: at least two million in Italy and tens of millions in Europe. Based on data from the National Register of Rare Diseases of the National Institute of Health, 20% of cases are of pediatric age under the age of 14: congenital malformations, endocrine disorders, nutritional, metabolic and immune disorders. Adult patients, on the other hand, for the most part have disorders affecting the nervous system and sensory organs, or diseases of blood and hematopoietic organs.
Researchers will present the lines of research conducted at the laboratories of the Cibio Department, which investigate the genetic and molecular mechanisms of many rare diseases and explore possible treatments.
The Neptune Fountain in Piazza Duomo
On the evening of Monday 28 February, the fountain of Neptune in Piazza Duomo in Trento will be lit with a "rare" green light as a sign of solidarity with patients with rare diseases.