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Launch of DATIS, Interreg project for inclusive tourism

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Inclusive and accessible tourism to meet the needs of people with disabilities and elderly people with limitations due to age and health problems: this is the aim of the new project ‘DATIS: Digital Frontiers for Inclusive Tourism’, involving the Department of Political and Social Sciences (DiSPeS) at UniTS.

The kick-off meeting of the two-year project, financed with over one million euros from the Italy-Slovenia Interreg Programme 2021-2027, was held on 28th May in Ljubljana, at the Beletrina publishing house.

The actions planned aim to improve digital accessibility and social inclusion in tourism in the cross-border region through an innovative, multidisciplinary and participatory approach, including the definition of guidelines and shared strategies.

Other matters planned include organising training workshops for tour operators, setting up a web portal on the accessibility of tourist services and implementing two pilot actions at the museums of San Michele sul Carso and the industrial heritage of Aidussina to test innovative solutions for users with different types of disabilities.

The project is led by Beletrina, a leading Slovenian organisation in the field of publishing and digital innovation, and sees as partners, in addition to DiSPeS, the regional agency PromoTurismoFVG, the consortium of social cooperatives Il Mosaico, the Tourist board of Nova Gorica and the Vipava Valley, and the Union of the Blind and Partially Blind of Slovenia. They are joined by the Municipality of Sagrado and Aidussina.

The DiSPeS, under the scientific direction of Prof. Moreno Zago, professor of Tourism Analysis and Planning and of Cross-border Relations and Local Development, will contribute to the administration of quantitative and qualitative questionnaires on travel experiences, the identification of best practices, and the analysis of the potential of the tourism sector.

He will also be responsible for the development of guidelines and a multilingual handbook on digital accessibility for tourist and institutional operators and for communication and dissemination activities of the results.

The project aims to reach a wide catchment area and to raise awareness among institutions and operators on the importance of digital accessibility and social inclusion.

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DiSPeS, under the scientific direction of Prof. Moreno Zago, is involved in the partnership
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Two international awards given to Federico Rosei

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Federico Rosei, full professor of Industrial Chemistry at the Department of Chemical and Pharmaceutical Sciences at the University of Trieste, has received two important international awards.

Rosei has been appointed Materials Research Society (MRS) Fellow 2024 for ‘his leadership in the nanomaterials synthesis and characterization, in particular multifunctional materials and their integration in optoelectronic devices, and for his sustained international efforts in service, mentoring and outreach in the field.’

The UniTS lecturer was also presented with the 2024 Fellowship Awards by the Canadian Association of Physicists (CAP)in recognition of his remarkable achievements in materials physics, particularly multiferroic materials and quantum dots, coupled with outstanding mentorship of trainees, and for international leadership which promotes the excellence of Canadian physics on a global scale’.

 

 

 

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He has been appointed Materials Research Society (MRS) Fellow 2024
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Malaria: UniTS, TWAS and Accademia Nazionale dei Lincei together for predictive spread algorithms

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Fetenech Meskele Ganebo, Dean of the School of Computer Science at Wolaita Sodo University - Ethiopia was a guest of UniTS for three months as part of a TWAS-SISSA-Lincei Research Cooperation Visits Programme grant. At UniTS, Ganebo worked with Sylvio Barbon Junior, a professor at the Department of Engineering and Architecture (DIA), harnessing the power of machine learning approaches to develop algorithms capable of predicting the spread of malaria.

According to the WHO World Malaria Report 2023, there are an estimated 249 million cases in 85 endemic countries in 2022, with 608,000 deaths. And Ethiopia, as WHO reports, is one of the three African countries that have suffered the most, along with Nigeria and Uganda.

In the high malaria transmission region of Wolaita, a densely populated rural area in southern Ethiopia, data on the spread of the disease is still collected manually. The first task for Ganebo and the Trieste team was therefore to digitise the available data.

‘The three months at UniTS were enough to achieve good results,’ said Ganebo, ‘The collaboration with Prof. Barbon Junior is promising. We have an ambitious plan to automate the collection of health data in the town of Wolaita Sodo and, at a later stage, throughout Ethiopia’. Automation would increase efficiency, accuracy and breadth of useful data, ensuring better patient care.

Once perfected, the algorithms will be used to study the combined effect of risk factors such as temperature, altitude, malaria vectors and population health status to provide health workers and policy makers with more effective predictive tools.

The technique will be used to create a regional surveillance protocol in Ethiopia to support health systems in managing mosquito control and resource allocation.

Ganebo is also the winner of the Spiga di Grano prize, awarded by the Cinzia Vitale non-profit association.

The TWAS-SISSA-Lincei research cooperation visit programme supports early-career researchers in UN-identified least developed countries on projects that contribute to the Sustainable Development Goals (SDGs).

It offers training and collaboration opportunities at the scientific institutions of the Friuli-Venezia Giulia System of Scientific Innovation (Sis FVG) in Italy. It is supported by the Italian Ministry of Foreign Affairs (MAECI) and the Italian Agency for Development Cooperation (AICS).

Photo: Prof. Eric Medvet, Prof.ssa Fetenech Meskele Ganebo e Prof. Sylvio Barbon Junior 

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Fetenech Meskele Ganebo, Dean of the School of Informatics at Wolaita Sodo University - Ethiopia hosted by the Department of Engineering and Architecture
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The **Innovamare** project is declared the "Blue Champion" of the European Union!

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Today in Luxembourg, as part of the "EIB Venture Debt & Advisory Summit", the presentation of the winners of the Blue Champions public call was held, among which was DIH Innovamare.

Prof. Guido Bortoluzzi, project coordinator for our University, says: " Innovamare has been a highly successful project that has led to concrete spin-offs in the territory, or rather in the maritime space, that unites Italy and Croatia. The creation of a Digital Innovation Hub located in Šibenik, Croatia, is only the most evident element of a larger result that consists in the creation of a transnational working group that is rapidly expanding beyond the Italian-Croatian borders in the direction of the entire Balkan area and beyond. We are proud to have brought a piece of UniTS into this project and to give our small contribution to its consolidation in the near future.“

"EU Blue Champion" is an initiative of the European Commission and the European Investment Bank which selects 20 innovative companies, projects, and initiatives that the European Commission and the EIB consider to best contribute to the development of the blue economy in the EU. Selected projects will be provided with EIB advisory services for defining project financing models, developing business models, and creating partnerships at the EU level. Each project should demonstrate the potential for a strong contribution to the EU mission "Renew our oceans and waters" and achieve three goals:

  • the restoration of marine and freshwater ecosystems;
  • the elimination of pollution;
  • the decarbonization of the blue economy.

The key elements of the Innovamare project include the development and construction of infrastructure, namely the Center of Competence in Marine Technologies in Šibenik and the Technological Park for Marine Technologies at the University of Zadar. Likewise, the procurement of innovative technological equipment, the establishment of test locations, the development and prototyping of marine technologies are planned for the mentioned infrastructure. In addition to the above, a key part of the project is raising awareness of the impacts of the blue economy and the need for digital and green transformation, which will be carried out in cooperation with the E1 Blue Acceleration Festival, demonstrations of cleaning with innovative underwater technologies and restoration of the marine ecosystem with divers as part of the E1 Blue Impact program, and employment of 20 researchers.

The digital innovation HUB Innovamare aims to become a central place for technology transfer, strengthening cooperation and connecting stakeholders on a cross-border and transnational level from the public, private and scientific research sectors for the development, testing and validation of marine technologies with the mission of the sustainability of the Adriatic Sea. The key founders and members of DIH are 6 largest scientific and research organizations, 7 supporting institutions and local and regional authorities and 4 companies from Italy and Croatia. Within its ecosystem, DIH is constantly working to secure financing, generate income for further investments and develop technological solutions for the digital and green transformation of the blue economy.

Digital Innovation HUB Innovamare submitted the project as part of the public call for "Blue Champions", and this achieved success is only a confirmation that everything done within DIH has a future and the support of institutions that will help us achieve our mission, which is sustainable blue economy.

Find more information about this initiative at www.mairos.org

 

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Created a Digital Innovation Hub located in Šibenik
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Environmental challenges of the future: 'gECO Podcast' on Spotify

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"Who are you calling a jackal?", this is the title of the first episode of the new podcast "gECO", the initiative developed within the Master's degree course in Ecology and Sustainability of Global Changes at the University of Trieste and produced entirely by the students, with the scientific supervision of the lecturers of the Department of Life Sciences and the course. A podcast created by young ecologists and designed to bring young people and adults closer to nature and discovering the environment that surrounds us. With guest Alessio Mortelliti, associate professor of Animal Ecology, the first episode is available free of charge on the Spotify online streaming platform and deals with the theme of the return of large carnivores to Italy and the often conflictual relationship between them and man.

gECO was born out of a desire, felt first and foremost by the students, to explore the themes of environmental, social and economic sustainability, while at the same time seeking to disseminate correct information to support actions that, starting with the individual, can be transformed into virtuous examples for society in general. This is why throughout the various episodes, gECO will also host thematic columns and present simple sustainability tips, offering listeners useful suggestions for reducing their own impact on the environment and acting consciously to guarantee a more sustainable future for new generations.

This initiative represents one of the integrative training activities that the Master's degree course in Ecology and Sustainability of Global Change offers its students, and is intended to promote the acquisition of soft skills and useful communicative abilities to further facilitate their entrance into the world of work.

gECO Podcast will be on a fortnightly basis and each episode will last approximately 30 minutes. All episodes will be available on SPOTIFY

INSTAGRAM

INFO REQUESTS

gECO: podcast written and produced by the students of Ecology and Sustainability of Global Change at the University of Trieste. Podcast speakers: Gaia Butini and Lorenzo Ferdinando Campaner. Editors: Federica Montenero, Giulia Cecco, Gaia Foltran, Davide Stocco, Irene Cecchia, Matilde Capitani, Guido Romagnoli, Maddalena D'Antiga, Allegra Polato, Martina Gasparut, Natalie Vargiu, Anna Vincenti, Gaia Butini, Paolo Meroi and Lorenzo Ferdinando Campaner. Sound supervision and post-production: Paolo Meroi.Theme song by Maddalena D'Antiga. Graphics and cover by Martina Gasparut. Lecturers on the scientific committee for content verification and support: Alessio Mortelliti, Chiara Manfrin, Giovanni Carrosio, Matteo Carzedda, Fabio Del Missier, Fabio Candotto Carniel and Francesco Petruzzellis.Academic project manager Giovanni Bacaro

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The first episode "Who are you calling a jackal?" is already available
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UniTS researcher Giacomo Filippini awarded Italian Chemical Society Medal

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Giacomo Filippini, a researcher from the Department of Chemical and Pharmaceutical Sciences at the University of Trieste, has been awarded the prestigious 'Giacomo Ciamician' medal of the Organic Chemistry Division of the Italian Chemical Society. The prize is awarded each year to a young researcher under 40 who has distinguished themselves at a national level for research of considerable originality and interest in the field of Organic Chemistry. Giacomo Filippini has been involved in the design and development of innovative (photo)catalytic transformations aimed at the synthesis of organic molecules of interest in the fields of theoretical and applied research.

The 'Giacomo Ciamician' medal will be awarded on Thursday 29th August 2024 during the 28th National Congress of the Italian Chemical Society in Milan, where Filippini will present the most significant parts of his research work.

Giacomo Filippini graduated with honours in Industrial Chemistry in 2013 from the University of Bologna, with an experimental thesis concerning the synthesis of new enantiomerically enriched atropisomers. In the same year he was accepted onto the PhD in Chemistry at the ICIQ in Tarragona (Spain), where he worked on the development of new enantioselective photo-organocatalytic transformations under the supervision of Prof. Paolo Melchiorre. In 2017 he was awarded his PhD and joined the group of Prof. Maurizio Prato as a research assistant at the University of Trieste, where he worked on the development of new carbon-based nano-catalytic systems. In April 2021, he won a competition for a type-A researcher position in Organic Chemistry, as part of the ERC project ‘eDOTS’ lead by Maurizio Prato) in the Department of Chemical and Pharmaceutical Sciences at UniTS. Following this, he took up his position as type-B researcher in the same department in October 2023. 

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MARE SOPRA: docufilm and debate on the future of the coastline

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2100. There’s no time to waste’ is a docufilm that, through the contributions of scientists and experts, takes stock of the effects of climate change on the environment and natural resources in 26 emerged and submerged sites on the Sicilian coast, trying to imagine what the situation will be like in 2100, the year that science uses to simulate future environmental scenarios through the projection of data collected so far.

It will be this work, which has already won awards at various festivals – produced in 2021 by Fabrizio Antonioli, an associate at the Institute of Environmental Geology and Geoengineering of the CNR (CNR-IGAG), and Thalassia Giaccone, of the Anton Dohrn Zoological Station, and scripted by Martina Camatta – that will officially kick off the ‘MARE SOPRA’ popularisation project on 9th May at 18:00 at the Miela Theatre. It was conceived by the University of Trieste and realised, with the collaboration of various partners, thanks to the contribution of the Region of Friuli Venezia Giulia, with the aim of raising awareness among the public, especially young people, about the rising sea levels caused by global warming and the consequences already visible on our coasts.

The docufilm will be followed, at 19:00 by the ‘Impact of sea level rise on Friuli Venezia Giulia’s coastline’ round table. Moderated by Franco Foresta Martin, former scientific and environmental editor of Corriere della Sera and RAI consultant (Quark and Geo&Geo), it will feature some of the leading experts on climate change and marine biology: Fabrizio Antonioli, a coastal geomorphologist from CNR-IGAG, specialising in the study of sea level variations; glaciologist Roberto Renato Colucci, from CNR-ISP; physicist Fabio Raicich, from CNR-ISMAR, marine microbiologist Francesca Malfatti (UniTS), climate physicist and Nobel laureate Filippo Giorgi (ICTP), Giorgio Fontolan of UniTS, lecturer in Sedimentology and Coastal Dynamics UniTS, and palaeontology lecturer Carlo Corradini (UniTS).

In the coming decades, sea levels will continue to rise dramatically, changing the geography of our coasts and damaging coastal structures. It has already risen by more than 20 centimetres since 1880 and is expected to reach 30 cm by 2050. We have already had warnings of what the situation may be: the most recent was the strong sea storm last November that hit the eastern coast of the Gulf of Trieste, from Muggia to Lignano, causing extensive damage to coastal infrastructure. The combination of high sea levels and winds from the southern quadrants accumulated water in the Gulf, leading to an explosive situation that could be repeated with greater intensity and frequency in the future.

With the popularisation project ‘MARE SOPRA’, conceived by Stefano Furlani, associate professor of geomorphology at the University of Trieste, the aim is to raise awareness of the problem of rising sea levels caused by climate change. ‘With its almost 100 kilometres of coastline, Friuli Venezia Giulia is particularly vulnerable to rising sea levels, with the risks of coastal erosion and flooding threatening communities and infrastructure,’ Furlani observes. ‘Rising sea levels could compromise coastal environments, but also many of the business sectors that gravitate to those areas, such as fishing and tourism. Therefore, it is crucial to raise awareness among citizens and especially the younger generation. Efforts to propose adaptation or mitigation actions are essential to tackle this problem while protecting people, the environment and the local economy from its consequences. MARE SOPRA intends to move in this direction, proposing meetings with experts, screenings of documentaries, hands-on experiences with students and citizens, and the creation of a virtual tour: an engaging and accessible tool to explore places and environments in a realistic and detailed way, almost as if one were on site’.

This is an interdisciplinary project, which will involve geomorphologists, sociologists and biologists from three university departments (Mathematics, Computer Science and Geosciences; Political and Social Sciences; and Life Sciences), but also citizenship, schools and associations through the Citizen Science model: it will be schoolchildren and citizens who will actively participate, after being suitably trained, in the measurement of sea level rise.

New digital technologies will also come into play, with the creation of a ‘virtual tour’ that will allow the public to virtually navigate and dive along the Friuli Venezia Giulia coastline. Thanks to 360-degree spherical aerial videos acquired by drone and by diving above and below the sea surface, a very high-resolution journey along the region’s coastline will be created from Muggia to Lignano: through a dozen clickable hotspots along the route map (including Muggia, Trieste, Duino Aurisina, Monfalcone, Staranzano, Grado, Marano Lagunare and Lignano), it will be possible to view audio content, videos, images, in-depth texts and web links to dive 360° above and below sea level.

The ‘virtual tour’, which will be tested directly by the public during an ad hoc event, will be usable from PCs, mobile devices and through Virtual Reality viewers, such as Oculus Meta 2-3, and can also be used by the science museums collaborating in the project for their dissemination activities. It stems from the experience of the Geoswim project, which started in 2012 when Furlani swam solo and surveyed along the entire coastline of Istria. The project, which has since involved biologists, archaeologists and geologists from all over Italy, has led – with the use of a boat equipped with GPS, a series of probes to measure water depth, salinity and temperature, and time-lapse and 360° cameras placed above and below sea level – to the mapping of hundreds of kilometres of Mediterranean coastline, collecting data on their morphological conformation and sea level in the present and past, as well as physical and chemical parameters such as temperature and conductivity. This summer, the mapping will be carried out by the UniTS researchers and lecturers involved in the project, who will complete the survey activities that have already begun on the coasts, by kayak and swimming.

During MARE SOPRA a number of informational meetings will be held in the municipalities of Grado, Muggia and Trieste, which will also be involved in the training and measurement activities, both theoretical and practical, conducted by young researchers and PhD students from UniTS. At the end of these activities the main coastal locations will be marked with two lines: the yellow line will mark where the sea will be in 2050, the red line its level in 2100. Finally, the usefulness of the project will be measured through questionnaires, which will be submitted to the participants in the various activities to assess the effectiveness of the 'social learning' actions.

Mare Sopra, coordinated by the University of Trieste and realised with the contribution of the Friuli Venezia Giulia Region, collaborates with the Marine Protected Area of Miramare, the Municipality of Muggia, the Marevivo Association – Fvg Delegation, the Marco Polo Institute of Grado, and the Galilei High School of Trieste.

 

 

 

 

 

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Underwater Noise Pollution: BluEcho Project

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The BluEcho research project is launching to address underwater noise pollution, assessing the level of noise generated by ships and wind farms in different marine basins (the Adriatic, North and Baltic seas). The project is based on EU guidelines for defining threshold values for continuous noise produced by humans in water and aims to build upon the work of previous European projects (JOMOPANS, AQUO, SONIC, JONAS, QUIETSEAS). Taking a multidisciplinary approach, BluEcho focuses on the interaction between source, medium, and receiver rather than one-way solutions.

A specific new approach will be developed for numerically modeling propellers and wind turbine blades, as well as large-scale acoustic maps. Initially, the developed methodology will be used to accurately assess the current health status of the sea. Subsequently, researchers will focus on predicting new scenarios where mitigation measures will be adopted. The effectiveness and economic feasibility of mitigation measures (including slow down or re-routing procedures in risk areas or so-called quiet periods) will also be evaluated, and the implementation of new protected areas will be proposed. Cost-benefit assessment will be conducted considering the needs of stakeholders, both in shipping traffic and wind farms.

The project, coordinated by the University of Trieste (DIA Engineering and Architecture and DEAMS Economic, Business, Mathematical and Statistical Sciences Departments), also involves the National Institute of Oceanography and Experimental Geophysics; Chalmers University of Technology – Gothenburg, Sweden; Institute of Marine Research – Bergen, Norway; Alfred-Wegener Institute – Bremerhaven, Germany.

 

 

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The project is coordinated by the University of Trieste
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BeSENSHome: Sensors in sensitive environments. Inclusive spaces which accommodate the needs of those with cognitive disabilities

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Now that the Italy-Austria Interreg project SENSHOME has come to an end, the University of Trieste has obtained new funding from the European Union, enabling the university to continue its studies. The funding will strengthen research and innovation and help to introduce advanced technology, more know-how and the best practices regarding architecture for people with cognitive disabilities.

This is the specific objective of the new Italy-Austria Interreg project "BeSENSHome: Sensors in sensitive environments. Inclusive spaces which accommodate the needs of those with cognitive disabilities".

As part of the BeSENSHome project, advanced systems and smart sensor networks will be specially installed into residences, day-care centres, workplaces and facilities hosting people with neurocognitive disabilities, in order to enhance environmental comfort for occupants. To achieve this innovative goal, these systems must be customisable in order to accommodate the needs of the residents, providing individuals with the maximum level of agency possible over their built environment. Thanks to artificial intelligence coupled with the sensor network, the environment will be able to learn the preferences or requirements of the occupant, identifying stressful triggers and adjusting environmental conditions. It will also be able to alert assistants if intervention is needed, pre-emptively preventing any potentially dangerous conditions from arising. The insertion of these sensor networks into people’s environments will be implemented to the finest detail to ensure optimal integration into existing contexts. To achieve these goals and make the system as useful and user-friendly as possible, a collaborative research and design approach will be adopted throughout the project.

The developed system will then be put to the test, implementing the technologies discreetly and unobtrusively in environments where neurodivergent people and their family members/caregivers need support in their daily lives.

This support will be enhanced by the study of architectural solutions for the spaces. For example, the appropriate choice of materials for furniture and upholstery, lights and light dimming devices will facilitate sight, tactility and comfort within the various environments. The chosen spaces will also be investigated from an acoustic, visual and thermo-hygrometric point of view. This is both in order to optimise the operation of environmental sensors and to study their appropriate positioning to ensure privacy, increase autonomy, and render everyday environments more inclusive and safe.

The UniTS scientific coordinator is Giuseppina Scavuzzo, Associate Professor in Architectural and Urban Composition, Coordinator of the Architectural Studies Course of the Department of Engineering and Architecture of the University of Trieste.

Project partners include: Free University of Bozen-Bolzano (lead partner), the University of Trieste, Kärnten University of Applied Sciences, Eureka system s.r.l., Fondazione Progettoautismo FVG onlus, MCI Management Center Innsbruck GmbH.

 BeSENSHome   

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Telethon-Cariplo call for proposals: funding awarded to Eugenio Fornasiero’s project on neurodevelopmental disorders

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Eugenio Fornasiero of the Department of Life Sciences at the University of Trieste has been awarded € 248,000 by the Telethon-Cariplo Call for Proposals to fund a research project on neurodevelopmental disorders.

The initiative, which the two Foundations commit to continuing into the future, is dedicated to clarifying those still obscure aspects of the human genome potentially responsible for rare diseases.

Now in its third year, the Fondazione Cariplo and Fondazione Telethon call for proposals has led to the selection of 14 new research projects, for a total of € 3.2 million and 22 research groups involved.

In Friuli-Venezia Giulia, € 248,000 have been allocated to fund a project of the University of Trieste.

This brings the total joint investment by the two Foundations to almost € 14 million, which has led to the funding of 59 research projects involving 90 Italian research centres.

This initiative, inspired by a programme of the US National Institutes of Health (NIH), aims precisely to ‘illuminate the darkest portion of the human genome’, inviting researchers to study genetic aspects and molecular mechanisms that are still largely unknown or poorly understood, but which represent potential for the development of new therapies for rare diseases. In particular, projects were to focus on the study of so-called T-dark targets, for which information on structure, function and interaction with molecules and drugs is unknown. Although the human genome has been completely sequenced, we still know very little about many genes and the proteins they encode. Suffice it to say that of the 4500 human proteins considered to be possible pharmacological targets, only 700 are currently in the crosshairs of approved drugs: this means that of all the others, more than 80 per cent, there could be proteins that are suitable to be studied in order to develop new therapies, but for several reasons are not being studied.

Eugenio Fornasiero from the Department of Life Sciences at the University of Trieste will coordinate a study on neurodevelopmental disorders. In particular, the project focuses on a specific gene called CCDC32, classified as TDark of which we have very limited knowledge. The loss of function of CCDC32 is the direct cause of a rare and non-specific syndromic intellectual disability,

often accompanied by physical abnormalities. By delving into its function, the fundamental basis for understanding not only this specific gene, but also the more general mechanisms underlying rare intellectual disabilities and associated physical malformations will be provided.

As far as the geographical distribution of the research centres involved is concerned, most - 14 out of 22 - are located in Lombardy; the others are in Emilia-Romagna, Friuli Venezia Giulia, Marche, Piedmont and Tuscany. Among the pathologies under study are certain forms of muscular dystrophy such as Duchenne’s and facio-scapulo-humeral dystrophy, blood diseases such as haemochromatosis, haemorrhagic telangiectasia and thalassaemia, but also neurodevelopmental disorders and rare tumours.

A total of 77 project proposals were submitted by Italian non-profit, public or private research organisations. Of these, 69 were deemed suitable and submitted to the evaluation process, entrusted to a medical-scientific commission of 15 internationally renowned scientists from all over the world and chaired by Dr. Massimo Pandolfo of Mc Gill University in Montreal (Canada). For the evaluation of the projects, the peer-review method was used, which indicates the critical assessment that a work or publication receives from specialists with similar skills to those of the person submitting it, guaranteeing the transparency and fairness of the evaluation.

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To clarify still obscure aspects of the human genome responsible for rare diseases
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