ERDERA is launching its Ethics & Regulatory Webinar Series with Situating ethics in the research continuum on 24 July 2026. The series will examine ethical and regulatory questions in rare disease research, beginning with a shared foundation in research ethics before turning to Advanced Therapy Medicinal Products (ATMPs) and artificial intelligence.
About the series
Complex technologies, data-intensive methods and innovative therapeutic pathways are creating new opportunities in rare disease research. They also raise ethical and regulatory questions that need to be considered from the earliest stages of research.
Through five webinars, experts will explore the rules, guidance and ethical considerations that underpin responsible research and clinical translation.“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 and Head of the Research and Innovation Department at Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus.
Webinar series schedule
| Title | Topic | Speakers | Date | Link |
|---|---|---|---|---|
| Situating ethics in the research continuum | What does ethics mean along the research continuum | Jaime Flamenbaum | View event | |
| Regulatory insights of advanced therapies research & development | Regulatory aspects of ATMPs | Viviana Giannuzzi | View event | |
| Ethics aspects of Advanced Medicines Research | Ethics aspects of ATMPs | Joana Namorado | Register | |
| Ethics & Artificial Intelligence in scientific research | Ethics aspects of Artificial intelligence | Annalisa Landi | — | |
| Artificial Intelligence in Biomedical Research: Risks and Obligations under the EU AI Act | Regulatory aspects of Artificial Intelligence | Silvia Torretta | — |
Opening webinar: situating ethics in the research continuum
The opening session will consider what ethics means across the research continuum and how it relates to each stage of knowledge creation and mobilisation. Jaime Flamenbaum will introduce a theoretical framework and apply it to a case study, providing a common reference point for the webinars that follow.
The webinar is open to researchers, clinicians, regulatory professionals, ethicists and others involved in or supporting rare disease research.
