Putting Patients First: How to Bring a Different Approach to Rare Disease Studies 2025 | Arena International Events Group | 12 May 2025 | Webinar

Why attend?
Understanding the patient pathway – what it means for a person to have that actual disease – before study initiation is critical to running effective rare disease studies.

Many trials continue to overlook key barriers to participation, from accessibility and trust to communication and support. This webinar will explore how applying insights from an understanding of the patient pathway in both study design and execution can improve trial enrollment, retention, and outcomes in rare disease studies.

Key Discussion Points:
• How to gather insights into the patient pathway
• Understanding the root causes of low patient participation and why traditional trial models may be falling short in rare disease studies
• Practical strategies to build patient-centric trials – applying patient pathway insights to protocol and study design
• Practical strategies for executing patient-centric trials – applying patient pathway insights to study execution and operations
• The role of patient advocacy groups, digital engagement, and transparency in building trust and long-term participation.

2025 Speakers

Jonathan Kornstein
Vice President, Rare Disease and Pediatrics

Gemma O’Connor
Director, Project Management

2025 Sponsor

• Caidya