Understanding the Invisible Patient & Mapping Rare Disease Journeys Beyond Diagnosed Populations

• Addressing undiagnosed and misdiagnosed patients that remain invisible in traditional RWD
• Using epidemiology to inform earlier diagnosis and targeted outreach strategies
• Balancing methodological rigor and operational feasibility in rare disease evidence generation

Speakers:

Alexander Cole

Executive Director & Head of Epidemiology & Real-World Science

Alexion Pharmaceuticals