Fondazione per la Ricerca Farmacologica Gianni Benzi ONLUS

Open ceremony and kick off meeting of the ERDERA partnership. Great to contribute with Gianni Benzi ONLUS - Pharmacological Research Foundation Viviana Giannuzzi #FGB #ERDERA

💼 Job opportunity! Join our team as an administrative secretary. 👉 Visit our website to find out more: https://lnkd.in/duR6gTek #JobOpportunity

📹#WODC2024 comes to a close!📹 From insightful keynotes to thought-provoking discussions, we have enjoyed connecting with the #RareDiseases community and explored collaborations with diverse stakeholders. Moreover, we had the opportunity to meet many of you in-person and discuss how we can work together throughout #ERDERA! Curious to learn more about our partnership? Don’t miss our Official Launch on Monday, October 28th ➡️ [https://loom.ly/yVfXdrY] #OrphanDrugs #PatientAdvocacy #WODC2024 Daria Julkowska, David Morrow PhD MBA, Ana Rath, Viviana Giannuzzi INSERM, EATRIS, Orphanet, Gianni Benzi ONLUS - Pharmacological Research Foundation, International Rare Diseases Research Consortium (IRDiRC)

It was today at the World Orphan Drug Congress Europe ! We discussed the Use of AI – Expectations vs Reality in small data sets/populations with Robin Sarfati CTO of Tekkare, Estelle Michael Policy and Public Affairs Lead at UCB, Bruno Sarfati CEO of As We Know and Tekkare, Viviana Giannuzzi head of research and innovation department at Gianni Benzi ONLUS - Pharmacological Research Foundation and moderated by Ana Rath Director at Orphanet. Thank you for all your questions!

💻 Have you already registered for the first event in the webinar series on hemoglobinopathies organized by HELIOS ACTION? Go to www.heliosaction.eu. 🤩 We can't wait to start the webinar series. #heliosaction #freewebinar

🚀 Join us for the launch event of the European Partnership on Rare Diseases!🌍 #ERDERA, a groundbreaking initiative backed by the EU's Horizon Europe and members states, brings together over 170 organizations with a shared mission: to transform the lives of 30 million rare disease patients across Europe and beyond. 💊🧬🩺With an estimated €380 million budget, this partnership will advance research in prevention, diagnosis, and treatment of rare diseases. Hear from key leaders in rare disease research, including: ✅ Representatives from French Ministries of Health and Research ✅Irene Norstedt , DG RTD, European Commission ✅Arjon Van Hengel, European Commission ✅Virginie Bros-Facer , CEO, EURORDIS-Rare Diseases Europe ✅ Prof. Guillaume Canaud , ASS POUR LA PROMOTION DU CENTRE SCOLAIRE DE L'HOPITAL NECKER-ENFANTS MALADES ✅JAMES LEVINE, Fondation Ipsen ✅ Daria Julkowska, INSERM & ERDERA Scientific Coordinator, 🔎Learn more: https://loom.ly/roZC5QM 📝 Secure your spot: https://loom.ly/roZC5QM Let’s take a giant step towards making Europe a leader in rare disease research! #RareDiseases #HorizonEurope #ResearchInnovation #ERDERA European Health and Digital Executive Agency (HaDEA) Horizon Europe INSERM Institut national de la santé et de la recherche médicale EATRIS International Rare Diseases Research Consortium (IRDiRC) Teamit

🚨 Exciting News from ERDERA! 🚨 We are thrilled to pre-announce our 2025 Joint Transnational Call for Proposals focused on pre-clinical therapy studies for rare diseases using small molecules and biologicals. 🧬🌍 This call offers a unique opportunity for researchers worldwide to collaborate on groundbreaking research that can potentially improve the lives of millions affected by rare diseases. 📅 Important Dates: - Call Opens: December 10, 2024 - Pre-Proposal Deadline: February 13, 2025 💡 Key topics include novel therapies, biomarkers, and proof-of-concept studies. We're encouraging partnerships with Early Career Researchers and Patient Advocacy Organizations to create an inclusive, interdisciplinary research environment. Read more about the call details here: https://loom.ly/-YEsh3Y Stay tuned for more updates and mark your calendars for our information webinar on December 17th! Please note that this is a draft announcement and the list of funders is not final. #RareDiseases #ResearchFunding #Collaboration #JTC2025 #ERDERA #ScientificResearch #Innovation #Healthcare #HorizonEurope European Health and Digital Executive Agency (HaDEA) EU Science, Research and Innovation Inserm Transfert INSERM EURORDIS-Rare Diseases Europe ANR, the French National Research Agency Fondazione Telethon ZonMw EATRIS Greater Paris University Hospitals - AP-HP Foundation For Rare Diseases RARE DISEASES INTERNATIONAL Teamit Daria Julkowska Yanis Mimouni

🚨 Call for Nominations: ERDERA Multistakeholder Advisory Group 🚨 The European Rare Diseases Research Alliance (@ERDERA) is seeking experts to join its Multistakeholder Advisory Board (MAB)! This is your chance to help shape the future of rare disease research across Europe. We are looking for professionals in the following fields: 1. Rare Disease Researchers 2. Healthcare Professionals 3. Public-Private Partnership and Industry Professionals 4. Digital Health and Data Scientists 5. Regulatory, HTA and Policy Groups 6. Funding and Grant Management Bodies 7. Education and Training Personnel 8. Strategic Coordinators 9. Ethics and Patient Consent Groups 10. Legal Experts in Healthcare and Researchers Your expertise will guide ERDERA in its mission to advance prevention, diagnosis, and treatment for over 30 million people in Europe living with rare diseases. 🔗 Click here to find more information: [https://loom.ly/-fvnkKs] 🔗 Submit your application by October 31, 2024! #ERDERA #RareDiseases #HorizonEurope #AdvisoryBoard #ResearchInnovation #PatientAdvocacy EU Science, Research and Innovation INSERM Inserm Transfert EURORDIS-Rare Diseases Europe World Duchenne Organization Fondazione Telethon Teamit EATRIS ECRIN (European Clinical Research Infrastructure Network) BBMRI-ERIC RARE DISEASES INTERNATIONAL International Rare Diseases Research Consortium (IRDiRC) conect4children Stichting TEDDY Network Daria Julkowska Rima NABBOUT-TARANTINO German Aerospace Center (DLR) ANR, the French National Research Agency ZonMw Research Council of Lithuania | Lietuvos mokslo taryba EBERHARD-KARLS-UNIVERSITAT TUBINGEN University of Tartu Centro Nacional de Análisis Genómico (CNAG) Vall d’Hebron Institute of Research (VHIR) - Vall d'Hebron Institut de Recerca University of Twente ACTA (Academisch Centrum Tandheelkunde Amsterdam) Maastricht University Gianni Benzi ONLUS - Pharmacological Research Foundation Universidade de Coimbra Foundation For Rare DiseasesAICIB - Agência de Investigação Clínica e Inovação Biomédica IRCCS Istituto Nazionale Tumori Fondazione G Pascale, Napoli, Italy

FGB will be at the World Orphan Drug Congress Europe in Barcelona! Our Head of Research and Innovation Department, Viviana Giannuzzi, will be presenting on ethics in rare disease research and joining a panel discussion on healthcare access in Europe. 👉 Learn more: https://bit.ly/FGB_WODC24

🩸🌐Want to learn more about haemoglobinopathies? Join the HELIOS ACTION webinars co-organized by FGB! ✨Every month world-renowned experts will share their latest research. The first appointment is October 23rd. 👇Register now and join us! #FreeWebinar #heliosaction #Haemoglobinopathies