People with rare diseases face many barriers and inequities in accessing diagnosis, treatment, and comprehensive care. This burden is even greater among marginalized communities with rare diseases. The disparities fall into three major categories: lack of diversity in preclinical and clinical data; lack of diversity in the membership in and leadership of patient advocacy organizations; and limited health care and research access, from diagnosis to insurance coverage, to representation in rare disease clinical trials. The result is underrepresentation of marginalized groups and research that does not accurately reflect the comprehensive needs and experiences of the impacted population. This session will highlight these challenges, discuss solutions already being implemented, and imagine what true health equity for people with rare diseases would be. 

Moderator

Nicholas St. Fleur

Science Reporter and Associate Editorial Director of Events, STAT; Host of "Color Code" Podcast

Speakers

Nicole Boice

Executive Director, Rare-X

Donna Cryer

President and CEO, Global Liver Institute

Mary McGowan

CEO, Foundation for Sarcoidosis Research

Tamar Thompson

Head of Global Corporate Affairs, Alexion, AstraZeneca Rare Disease