Learn the Requirements and Take an Active Role in Developing the Medical Record of Your Treatment for Your Rare Disease

Rare disease patients often face unique challenges in accessing therapies, where thorough documentation can make all the difference. This roundtable will guide participants through the steps of building a strong medical record, navigating documentation requirements, and using appeals effectively to secure access to treatment. The discussion will also explore how outreach to the rare disease support community can strengthen advocacy efforts and improve outcomes. Attendees will be invited to share their own experiences—whether as patients or providers—to identify barriers and practical solutions together.