Date & Time: November 27, 2026, from 9:30 AM to 4:00 PM (CET)
Format: Online Webinar
Hosted by: National Research Council of Italy (CNR) – Interdepartmental Center for Research Ethics and Integrity (CID Ethics)
Access: Free admission / Open access

Event Overview
The CNR’s Interdepartmental Center for Research Ethics and Integrity (CID Ethics) is hosting the webinar “Frontiers in Rare Disease Research: Research Ethics, Advocacy, and Data Sharing.”

Patients with rare diseases often face extreme vulnerability, isolation, and a critical lack of appropriate treatments and dedicated care, making their plight largely invisible. This extraordinarily challenging reality calls for heightened public awareness and mandates that institutions deploy equally extraordinary political and economic measures to effectively address their needs. Ensuring adequate healthcare and protecting patient rights – regardless of the specific pathology or socio-economic context – is a fundamental matter of justice, ensuring that illness does not become a driver of discrimination, poverty, or social exclusion.

This seminar will showcase recent scientific breakthroughs in diagnostics, drug development, therapeutics, and rehabilitation. In addition, speakers will outline national healthcare policies and European Union (EU) data-sharing frameworks, the performance of centers of excellence, the establishment of collaborative networks, and recent clinical trial regulations alongside their impact on the workflow of ethics committees.

Patient Association Focus & Survey Insights
A dedicated segment of the webinar will explore the vital role of Patient Associations (PAs) in driving rare disease drug development, shaping legislation, and representing patient interests within ethics committees. The event will also feature the preliminary results of a comprehensive survey distributed to PAs. This survey gathers direct experiences and insights on core scientific research topics, including:

• Clinical trials
• Informed consent
• Health data privacy
• The integration of Artificial Intelligence (AI)
• Patient involvement in institutional decision-making processes

A dedicated discussion session will follow at the conclusion of the seminar to review and debate these survey findings.

Project Context
This event is part of the initiatives launched under the “Center for the Research of New Drugs for Rare Diseases” project, established through an agreement between the CNR and the CNCCS Consortium (Collezione Nazionale dei Composti Chimici e Centro Screening). The project aims to champion the research, trial testing, allocation, and distribution of rare disease pharmaceuticals. The specific research scope assigned to CID Ethics-CNR (Work-Package 6 – Bioethics) focuses on the ethical analysis of healthcare, assistance, and rehabilitation strategies, as well as developing practical tools to optimize support services for patients and caregivers.

Contact & Organization Details

• Organized by: CNR – CID Ethics
• Organizing Coordinator: Stefano Veneroni
• Address: Via Taurini 19 – Rome, Italy
• Email: info@ethics.cnr.it
• Event Links: Webinar Poster