On March 30, 2026, I attended RISE Together: Data Sharing Across the Rare Disease Ecosystem [1] expecting a discussion about the platforms and infrastructure needed to move data more efficiently across systems. Instead, what surfaced over the course of the day was something more fundamental, and more difficult to resolve. The rare disease field is …
Continue reading “When the Data Exists but Doesn’t Travel: Lessons from RISE Together 2026”