| Newsletter no. 25 - July 2024 | | | | | | | EJP- RD: THE FINAL CONFERENCE | | | | | | | | | The final conference of the EJP RD (European Joint Programme on Rare Diseases) project was held in Bari, Italy, on 27 and 28 May, 2024. More than 150 researchers, clinicians, patients, research funders and industry representatives joined the event sharing the most updated novelties coming from rare disease research and the project outputs offered to the scientific community. | | | | | | | | | | | FONDAZIONE GIANNI BENZI AT THE MONOTHEMATIC CONFERENCE WORKING GROUP “RARE DISEASES AND ORPHAN DRUGS” SIF4RARE | | | | | | | | | Fondazione Gianni Benzi participated in the Monothematic Conference “Rare Diseases and Orphan Drugs” SIF4RARE Working Group that took place on 23-24 February 2024 at the Bari Chamber of Commerce. The conference was created with the main objective of promoting translational research of rare diseases. | | | | | | | | | COLLABORATIVE RESEARCH Last updates on our collaborative projects | | | | | | | The Foundation has recently become a Beneficiary of a new 4-year project, starting on 1 Jan. 2024 and funded under the Horizon Europe Framework Programme, ERAMET. The project aims to enhance decision-making and regulatory processes in the development of paediatric and orphan drugs, using an integrated model that leverages innovative research methodologies such as modelling & simulation (M&S) along with an Artificial Intelligence-based platform. | | | | | | | | | | | RESULTS OF A NEW STUDY ON PERINATAL HIV PUBLISHED | | | | | | | | | On 27 May 2024, the results of the Early Anti-Retroviral Treatment in Children (EARTH) study on HIV-related events were published in eClinical Medicine, part of THE LANCET Discovery Science. The EARTH paediatric clinical study was carried out in the context of the EPIICAL project, a large research consortium coordinated by Penta ID Network and funded by ViiV Healthcare. | | | | | | | | | | | TWO GROUNDBREAKING PUBLICATIONS PAVE THE WAY FOR THE FUTURE OF RESEARCH DATA SHARING AND INFORMATION GOVERNANCE | | | | | | | | | Two new papers featuring our researcher Annalisa Landi as one of the authors and released in the framework of the European Joint Programme on Rare Diseases (EJP RD), have been published in the journal Nature. These papers propose a new way to responsibly share research data, medical records, biological samples and other biomedical resources. | | | | | | | | | | | THE NEW ARTICLE “LEARNING FROM CONECT4CHILDREN: A COLLABORATIVE APPROACH TOWARDS STANDARDISATION OF DISEASE-SPECIFIC PAEDIATRIC RESEARCH DATA” HAS BEEN PUBLISHED | | | | | | | | | The article “Learning from conect4children: A Collaborative Approach towards Standardisation of Disease-Specific Paediatric Research Data” has been published in the journal MDPI on April 8, 2024.
This work originated as part of the conect4children project, in which Fondazione Gianni Benzi onlus is a Beneficiary, established to facilitate the development of new medicines and other therapies for paediatric patients. | | | | | | | | | ACROSS THE WORLD Updates and latest news across the world | | | | | EUROPEAN PARLIAMENT ADOPTS ITS POSITION ON EU PHARMACEUTICAL REFORM | | | | | | | On 10 April 2024 , the European Parliament has adopted its position on the EU pharmaceutical reform. The new pieces of EU law come from the "pharmaceutical package" proposed by the European Commission in April 2023 to amend EU pharmaceutical laws. This package aimed to enhance availability, accessibility, and affordability of human medicines, while also fostering the competitiveness of the EU pharmaceutical sector with higher environmental standards. | | | | | | | | | WHO ISSUES NEW GUIDANCE ON ETHICAL USE OF LARGE MULTI-MODAL MODELS (LMMS) IN HEALTHCARE | | | | | | | On 18 Jan 2024, the World Health Organization (WHO) has released a new guidance document aimed at governing the ethical utilisation of Large Multi-modal Models (LMMs) in healthcare. Unlike conventional AI models, LMMs can process various forms of data inputs and generate novel contents spanning text, images, or video independently by the original data type. | | | | | | | | | Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus | | Sede legale: Via Abate Eustasio, 30 – 70010 Valenzano (BA), Italy
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