During this webinar, we explored some of the obstacles unique to the Black community when moving through life with a rare disease. Our distinguished speakers discussed various challenges, from socioeconomic factors to healthcare disparities. Also shared were practical tips and collaborative approaches to improve the experiences of Black individuals in the rare disease space and healthcare system.
Moderator:
Sarita Edwards, MA | CEO and President - E.WE Foundation
Speakers:
Michele Wright, Ph.D., MS | Co-founder, Board Chair, and Senior Executive Director - National Organization of African Americans with Cystic Fibrosis (NOAACF)
Deanna Darlington | President - Links2Equity
Eve Dryer | Vice President, Patient Advocacy - Travere Therapeutics