Underrepresentation in Rare Disease Research – Driving Promise to Practice – HES 2022 Session

Underrepresentation in Rare Disease Research – Driving Promise to Practice Health Equity was a session at the 2022 RARE Health Equity Summit.

This session explores the various ways that research can be more inclusive, what barriers exist that may exclude marginalized populations, and how those barriers can be eliminated.

The RARE Health Equity Summit, hosted by Global Genes in partnership with the Rare Disease Diversity Coalition (RDDC) convenes all stakeholders in the rare disease community to identify collaborative efforts to address inequities in the care of patients with rare diseases, specifically focusing on reducing disparities, discrimination, and biases felt by patient communities. The 2022 Health Equity Summit was held in Atlanta, Georgia, November 9-11, 2022.

Moderator:
Isaac Rodriguez-Chavez, PhD, MHSc, MSc
Senior Vice President for Scientific and Clinical Affairs, ICON plc

Panelists:
* Veronica Ajewole, PharmD, BCOP
Assistant Professor of Pharmacy Practice, College of Pharmacy and Health Sciences, Texas Southern University

* Magnolia Wang
Founder, STAC3

* Nicole Kressin, RN, MSN
Co-Chair, Diversity Committee, Rare Diseases Clinical Research Network

* Deanna Portero
Management Analyst, Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences