Podcast and Report: Insights and Recommendations for Organizational DEI Strategies

April 2, 2022

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

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