Podcast and Report: Insights and Recommendations for Organizational DEI Strategies

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.

 

See full report

RARE-Xtra DEI Transcript