Ensuring diversity, equity, and inclusion in rare disease organizations requires focus programs that engage all stakeholders. According to 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.

Daniel Levine spoke to Teneasha Washington, Diversity, Equity and Inclusion Lead for RARE-X, J.P. 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’ve encountered.

Click here to see the full report.

Click here for the transcript to the RARE-Xtra Podcast: RARE Xtra DEI Transcript 3 18 22