EPISODE · Mar 31, 2022 · 44 MIN
Ensuring Diversity, Equity, and Inclusion in the World of Rare Disease
from RARE-X · host RARE-X
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.
What this episode covers
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.
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Ensuring Diversity, Equity, and Inclusion in the World of Rare Disease
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