ERDERA is launching a new Ethics & Regulatory Webinar Series to support responsible rare disease research in areas such as ATMPs and artificial intelligence.
The new ERDERA Ethics & Regulatory Webinar Series will explore the rules, guidance and ethical considerations that support compliant, responsible research and smooth clinical translation. The series will offer a practical space for researchers, clinicians and other stakeholders to examine how ethics and regulation shape innovation in rare diseases.
About the series
Rare disease research increasingly relies on complex technologies, data-intensive methods and innovative therapeutic pathways. These developments create opportunities for patients and families, but they also raise ethical and regulatory questions that need to be addressed from the earliest stages of research.
The first webinar will focus on ATMPs and Artificial Intelligence applied to biomedical research. Over time, the series may expand to address broader ethical and regulatory questions emerging across the rare disease landscape.
“Ethics and regulation are key enablers of innovation in rare disease research. This webinar series will bring together experts to discuss the evolving ethical and regulatory landscape of ATMPs and AI, starting with an introductory session on the meaning of ethics along the research continuum” said Viviana Giannuzzi, ERDERA Expert on Ethics and Regulatory, Head of Research and Innovation Department, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus.
First webinar: situating ethics in the research continuum
The introductory webinar, Situating ethics in the research continuum, will lay the groundwork for the episodes ahead. Before focusing on ATMPs and AI in more detail, the session will ask what ethics means across research activities and how it touches every stage of knowledge creation and mobilisation.
The webinar will present a theoretical framework for situating ethics across the research continuum. A case study discussion will then give participants a concrete reference point for future sessions in the series.
Who should attend
The webinar is open to researchers, clinicians, regulatory affairs professionals, ethicists and anyone involved in or supporting rare disease research who wants to engage responsibly with ATMPs or AI in a biomedical context.
By creating a dedicated forum for ethics and regulation, ERDERA aims to strengthen shared understanding across disciplines and support rare disease research that is scientifically robust, ethically grounded and ready to move responsibly towards clinical impact.