Sophia Zilber | Vice President
Cure Mito Foundation
Sophia Zilber is an advocate, data expert, and rare disease leader who blends deep personal commitment with over two decades of professional experience in drug development. With a background in clinical data analysis and statistical programming, she brings both expertise and heart to everything she does. She is especially focused on raising awareness around patient registries and the importance of collecting high-quality data for rare disease research and drug development. Sophia currently serves as Vice President and Patient Registry Director at the Cure Mito Foundation, where she is leading the development of a global Leigh syndrome patient registry to support research, accelerate treatments, and center the voices of families.
Appearances:
Day 2 - World Orphan Drug Congress USA 2026 @ 15:00
Publishing Your Registry Data: A Roadmap for Patient Organizations
Publishing registry data can feel daunting for patient organizations. This session provides a practical, step-by-step overview of how patient groups can lead the process from data collection to peer-reviewed publication. Attendees will learn how to prepare their data for publication, assemble and manage a publication team, define roles and responsibilities, and efficiently lead a manuscript as a patient organization. The session will also demystify the journal submission and peer-review process, with practical tips to keep projects moving forward.
Learning Objectives
- By the end of this session, participants will be able to:
- Understand the key steps required to prepare patient registry data and move it toward peer-reviewed publication
- Identify essential team members, clarify their roles, and lead a publication as a patient organization
- Apply practical strategies to keep manuscripts progressing efficiently and avoid common delays
- Navigate the journal submission and peer-review process with confidence
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