Ensuring diversity, equity, and inclusion in rare disease organizations requires focused programs that engage all stakeholders, according a nine-month project just completed by RARE-X. The project was undertaken to provide a general overview of the rare disease landscape regarding DEI issues and offer recommendations to support RARE-X’s efforts to ensure the long-term development of an inclusive rare disease data platform. We spoke to Teneasha Washington, diversity, Equity, and Inclusion lead for RARE-X, JP Sacksteder, senior director of patient advocacy relations for Genentech, and Nancy O'Donnell, director of outreach for the Usher Syndrome Coalition. The three discuss the RARE-X report, their own experiences around DEI issues, and how to best address the challenges they have encountered.