Fondazione per la Ricerca Farmacologica Gianni Benzi ONLUS

We are #hiring 2 Researchers in Bari. 👇 Apply now or share this post with your network

🚀Last week, we had the pleasure of hosting the kick-off meeting for the newly granted project, HemaFAIR, funded by the European Commission’s Horizon Europe Twinning programme. 🎯HemaFAIR, under the action of ‘Coordination and Support Actions (HORIZON-CSA)’ aims to unravel the scientific excellence and innovation potential of Cyprus, through and an EU network of excellence on the use of FAIR (findable, accessible, interoperable, reusable) principles in rare haematological disease research. 📌With the leadership of Dr Petros Kountouris this project is led by the Department of Molecular Genetics Thalassaemia at the Cyprus Institute of Neurology and Genetics (CING). HemaFAIR, in collaboration with 4 other partners from Italy (Giani Benzi Foundation PI: FedeleDuccio Bonifazi) Spain (Vall d'Hebron University Hospital PI: Dr María del Mar Mañú Pereira) and the Netherlands (Amsterdam UMC PI: Dr Ronald Cornet; Leiden University Medical Center, PI: Marco Roos) has commenced on July 1st, 2024 and the kick-off meeting took place in Cyprus on July 11-12, 2024, where the consortium partners had the opportunity to have informative discussion sessions on the use of FAIR principles for data management in rare disease research. #HemaFAIR, #FAIR data, #FAIR principles, #Data management, #HORIZON-CSA, #Twinning

📅 The General Assembly and Scientific Meeting of EPTRI will take place in Bari on 18 and 19 July 2024. FGB will participate in the meeting with important contributions from its researchers. 👉 Read more: https://bit.ly/eptri_ga24

💻 Join for an exciting workshop on Sickle Cell & Thalassaemia, covering epidemiology, treatment guidelines, gene therapy, and more. 📅 Register by June 28th! 👉 Link for registration: https://bit.ly/3VWViq6 👉 Check out the agenda for more details: https://bit.ly/emaw_agenda

🤩 Exciting updates from the DANTE EDIH general meeting, including FGB's presence! We are pleased to share the success of our recent general meeting, a crucial moment in the DANTE EDIH project. The meeting highlighted the progress of our ongoing initiatives and projects. #DANTEEDIH #europeandigitalinnovationhubsnetwork #digitaltransition #digital #artificialintelligence #Cybersecurity #FGB

Attention all teenagers aged 12-18 living with a #raredisease, including arthritis or multiple sclerosis, passionate about #healthcare, #biomedicalresearch, #ChildrensRights and emerging innovations in clinical research! Join the paediatric Patient Expert Group (PEG) and contribute to making the research world more inclusive for young patients living with rare diseases! 📅 28-29 September 2024 📍 Bari, Italy 🚨 Deadline to show interest: July 10, 2024 ℹ https://lnkd.in/dTxDt-si By taking part in the PEG, you will learn about the progress of biomedical research, including the latest advancements in health data and clinical research methodologies and their relevance to certain rare paediatric diseases. Your mission will be to support the researchers participating in the #INVENTS project with your opinions and suggestions and to make the project a success for you and other children suffering from a rare disease. Looking forward to having you onboard!

Commemorating World Sickle Cell Day: Enhancing Sickle Cell Care through ARISE. Today, on World Sickle Cell Day, we unite with the international community to emphasise the theme "Hope Through Progress: Advancing Sickle Cell Care Globally." ARISE (African Research and Innovative Initiative for Sickle Cell Education) is committed to enhancing the well-being of individuals impacted by sickle cell disease (SCD) through advanced research, inventive approaches, and cooperative endeavours. Under the H2020-MSCA-RISE-2018 programme, the European Union is supporting the ARISE project. It has been promoting a series of coordinated staff exchanges that involve many agencies and disciplines. Our goal is to facilitate the exchange and dissemination of effective methods in newborn screening, diagnosis, and treatment of SCD by assembling seasoned researchers, emerging investigators, and other pertinent personnel. Our objective is to augment the ability to conduct research and enhance the quality of services, ultimately resulting in improved disease outcomes. You, too, can participate in our efforts to create a positive impact. By: Promoting the incorporation of newborn screening into established immunisation programmes. Advocating for policies that allocate resources and provide importance to sickle cell disease (SCD) research and healthcare. Engaging in cooperation with healthcare professionals to guarantee prompt identification and efficient therapy for every child born with sickle cell disease (SCD). For our policymakers, your assistance is crucial. By giving priority to newborn screening and providing financing for sickle cell disease (SCD) initiatives, you can assist us in advancing the care of individuals with sickle cell disease and bringing hope to millions of people. Collectively, we can make substantial advancements and enhance the well-being of individuals impacted by this illness. Want to know more about the ARISE project? Visit https://lnkd.in/dDzpSZG4 for more information. Happy World Sickle Cell Day! #WorldSickleCellDay #SickleCellAwareness #HopeThroughProgress #ARISE #NewbornScreening #SickleCellCare

🌍🩸 Today is World Sickle Cell Day. Let's come together to raise awareness, offer support, and build a brighter future for those affected by sickle cell disease. 💪❤️ The HELIOS COST Action is dedicated to integrating, harmonizing, and disseminating current knowledge on hemoglobinopathies, including sickle cell disease, with a focus on improving patient outcomes. Join us and help us on our mission! www.heliosaction.eu #SickleCellDisease #SickleCellAwareness #hemoglobinopathies #cing #hemoglobin #sicklecell #HELIOS #COST

ENCePP Launches New Podcast Series on Scientific Independence and Transparency The European Medicines Agency's (EMA) ENCePP network has launched a new podcast series, "Conduct Your Study," to address challenges to scientific independence in pharmacoepidemiology and pharmacovigilance research. The first episode features an interview with Barbara Mintzes, Professor of evidence-based pharmaceutical policy at the University of Sydney, who discusses industry-funding bias in research and the role of the ENCePP Code of Conduct in promoting transparency. Upcoming episodes will feature a wide range of stakeholders and cover topics such as conflicts of interest, transparency, and scientific independence in non-interventional post-authorisation studies. 👉 Listen to the first episode: https://lnkd.in/dfrYXj_A

We are excited to announce the publication of the results of a new pediatric clinical trial called EARTH, conducted within the EPIICAL project, a large research consortium coordinated by Penta ID and funded by ViiV Healthcare. The EARTH study aims to evaluate the efficacy and safety of a new antiretroviral treatment for children with HIV infection. Our researcher Viviana Giannuzzi played a key role as a consultant on the ethical and regulatory aspects of the study. 👉 To learn more, please visit: bit.ly/studyperinatalHIV