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Top benzifoundation.org News

A Causal Discovery Workflow for Rare Diseases: Experts-in-the-Loop Analysis of Sparse Longitudinal Data
Artificial Intelligence

A Causal Discovery Workflow for Rare Diseases: Experts-in-the-Loop Analysis of Sparse Longitudinal Data

Causal networks provide a mechanistic understanding of clinical phenomena, allowing for personalized and explainable decision-making. Causal discovery, namely the task of constructing such models, is challenging, particularly for rare diseases, where observational data are sparse, medical knowled...See the Story
Have your say: EMA-EU plans for electronic product info for medicines - Fondazione Gianni Benzi Onlus
Medical

Have your say: EMA-EU plans for electronic product info for medicines - Fondazione Gianni Benzi Onlus

The European Medicines Agency (EMA) has launched a public consultation to collect input for a reflection paper on patient access to electronic product information (ePI). The ePI is the future electronic product information for medicines, and it is the outcome of a joint EMA-Heads of Medicines Agencies (HMA)-EC collaboration to facilitate informed decision-making by patients and healthcare professionals and improve overall patient safety. The ePI…Read Article

Promoting gender equality in research: FGB at COST Connect - Fondazione Gianni Benzi Onlus

Fondazione Gianni Benzi participated in the COST Connect – Gender Equality Plans in COST Actions event, held in Brussels on 13 May 2025. The initiative, organised by COST (European Cooperation in Science and Technology), represented an important opportunity for dialogue among COST Actions members committed to promoting gender equality in research and innovation. The Foundation was invited to participate in the event due to its responsibility for…Brussels · BrusselsRead Article

New EU rules on Health Technology Assessment - Fondazione Gianni Benzi Onlus

Following a public consultation period, the Regulation on Health Technology Assessment (HTA) has been officially published and entered into force. The new rules establish a permanent EU framework for the joint clinical assessment of health technologies, such as medicines and medical devices. By encouraging collaboration between Member States, the Regulation will support quicker and more consistent decision-making on pricing and reimbursement at …MedicalRead Article

EMA boosts 3Rs in drug testing - Fondazione Gianni Benzi Onlus

The EMA (European Medicines Agency) “Reflection paper on the current regulatory testing requirements for human medicinal products and opportunities for implementation of the 3Rs” has been developed as a follow-up to the 2016 “Guideline on the principles of regulatory acceptance of 3Rs (replacement, reduction, refinement) testing approaches”. Its aim is to incorporate newly developed 3Rs (replacement, reduction, refinement) approaches that are no…Bari, Apulia · BariRead Article

New EDPB guidance on age assurance and data protection - Fondazione Gianni Benzi Onlus

On 11 February 2025, the European Data Protection Board (EDPB) has released a new statement outlining key principles and concerns regarding age assurance measures on online platforms. The document provides guidance for organisations implementing age verification and estimation technologies while ensuring compliance with EU data protection laws, including the General Data Protection Regulation (GDPR). The EDPB highlights the need for a privacy-pr…Bari, Apulia · BariSee the Story

World Thalassaemia Day 2025 - Fondazione Gianni Benzi Onlus

8 May is the World Thalassaemia Day, a major opportunity to raise public awareness about this blood disorder that affects millions of people worldwide. Thalassaemia is a type of haemoglobinopathy, a genetic condition that impairs the production of haemoglobin – the protein in red blood cells responsible for transporting oxygen. This condition can lead to chronic anaemia and complications that often require medical care, including regular blood t…Italy · ItalyRead Article

FAIR Principles Training School - Fondazione Gianni Benzi Onlus

Fondazione Gianni Benzi is pleased to announce its participation in the FAIR Principles Training School organised by HemaFAIR in collaboration with HELIOS network. which will be held from 12 to 14 May 2025 at the Hotel Indigo in Larnaca, Cyprus. This event will provide learning on research data management applying the FAIR (Findable, Accessible, Interoperable, Reusable) principles. The programme includes a series of sessions covering key aspects…Cyprus · CyprusRead Article

NACDS issues statement on Seniors’ Access to Critical Medications Act

WASHINGTON – The National Association of Chain Drug Stores today issued a statement regarding the House Energy and Commerce Committee’s anticipated markup of The Seniors’ Access to Critical Medications Act (H.R. 2484), clarifying concerns about the bill’s potential impact on patients and pharmacies.“In its current form, this bill would undermine the pro-patient benefits of the pharmacist’s role in medication dispensing. It also would undermine s…Medical · WashingtonSee the Story

New EU Fee Regulation waives charges for academia - Fondazione Gianni Benzi Onlus

On 1 January 2025, Regulation (EU) 2024/568 on fees and charges came into force. It affects the European Medicines Agency. Such law stipulates that scientific advice fees are waived for entities not engaged in economic activity, including academia. This exemption also applies to protocol assistance and qualification procedure fees, as they are specific categories of scientific advice. This marks a significant milestone, as financial constraints …European Union · BariRead Article

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