Rare DIEM 2025 | Patient Rights in a Digital Era: Policy, Ethics, and Global Frameworks

Patient Rights in a Digital Era: Policy, Ethics, and Global Frameworks
Presentation by Antoine Daher | Founder & President | Casa Hunter, Brazil | Brazilian Federation of Rare Disease Associations (FEBRARARAS)
Rare DIEM 2025: Session VII | Ethics and Regulatory: The Broader Picture

In his presentation, Antoine Daher addresses one of the most critical topics in modern clinical research: how to protect patient rights and data privacy while enabling innovation and expanding research opportunities.

Speaking from the perspective of Latin America, Antoine explores:
-The urgent need for robust data sovereignty and legal safeguards
-How to build trust and transparency in research environments
-Strategies to ensure ethical use of patient data in the age of AI and digital platforms
-Why expanding clinical trials in Latin America benefits both science and patients—if done with the right protections
-The role of advocacy and cross-sector collaboration in accelerating rare disease research

If you’re a sponsor, investigator, policy-maker, or patient advocate, this talk offers actionable insights on balancing innovation, ethics, and patient trust in a rapidly changing digital landscape.

📍 Rare DIEM Virtual Summit 2025 | June 12, 2025

Farmacon Global is a strategic partner for biotech and pharmaceutical companies looking to accelerate clinical research and market access in Latin America.