Fondazione Gianni Benzi participated in the event Congresso Internazionale Malattie Rare 2022: Ritorno al futuro, held on 24-25 June in Bari.
The event offered an overview on rare diseases projected towards the near future. The meeting was focused on the scientific innovation in the field of rare diseases, especially on the access to innovative and personalised treatments to patients. The value of the cooperation among all the stakeholders, including the crucial role of international partnerships, was widely discussed. Moreover, an interesting highlight on the importance of ensuring suitable healthcare services to patients at all the stages of the disease and in all care settings, especially the patients’ home, was provided.
During the event, researchers from Fondazione Gianni Benzi presented five posters on several contributions provided in the field of rare diseases that has always been one of our main areas of interest.
Particularly, Rossella Conte described the collaborative experiences in the field of rare haemoglobinopathies, such as thalassaemia and Sickle Cell Disease, carried out by Fondazione Gianni Benzi within international research projects and networks as well as specific initiatives on patients’ engagement and awareness.
Antonella Didio presented a poster dedicated to the African Research and Innovative Initiative for Sickle Cell Education: Improving Research Capacity for Service Improvement (ARISE) project, that Fondazione Gianni Benzi coordinates. It aims at creating an interagency and multidisciplinary staff exchange programme to share and implement the best practices in the management of Sickle Cell Disease. The main activities conducted so far were widely explained.
An overview of the Orphan Medicinal Products authorised in Europe in the period 2000-2021 and the needs covered, as extracted from the EuOrphan database hosted by Fondazione Gianni Benzi, was provided by Viviana Giannuzzi.
Annalisa Landi presented the Informed Consent Form template for registries, allowing easy adaptation to the European Reference Networks, country and site-level specificities, developed within the European Joint Programme on Rare Diseases (EJP RD).
Considering that the majority of genetic rare diseases start in childhood and that most life-threatening rare diseases have an exclusively paediatric onset, the contribution that the European Paediatric Translational Research Infrastructure (EPTRI), in which Fondazione Gianni Benzi is actively involved, could bring to the rare diseases field, was highlighted in a specific poster presented by Lucia Ruggieri.
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