You have requested access to member only content.
Q&A: Race and rare disease
It takes five years and up to seven clinicians on average to get a rare disease correctly diagnosed. It can be even more difficult if you’re a person of color, says Tammy Boyd, MPH, JD, chief policy officer of the Black Women’s Health Imperative, and Kimberly Haugstad, MBA, co-founder of Upequity and former CEO of Global Genes, a worldwide rare disease organization.
Boyd and Haugstad are on the steering committee for the Rare Disease Diversity Coalition (RDDC), which was launched by the Black Women’s Health Imperative to address the “extraordinary challenges faced by rare disease patients of color.” These challenges include underrepresentation in genomewide studies and clinical research trials, as well as broader racial disparities in access to affordable care and social determinants of health. All of those challenges can worsen an already arduous process for the one in 10 Americans suffering from a rare disease.
PSMJ spoke with Boyd and Haugstad about their thoughts on race and rare disease. This Q&A has been lightly edited for clarity.
This is an excerpt from members-only content. Please log in or become a member to access the full content.
Please Log InForgot username or password?
Not a member? Let's fix that!
A membership to Accreditation and Quality Compliance Center provides accreditation and safety professionals with a collection of continuously updated tools, best-practice strategies, and compliance tips developed by industry experts. With two membership options, you can customize your access level depending on your education and training needs.
Register to access the free content available on the site or become a member today. Click here for more information.
For questions and support, please call customer service: 1-800-650-6787.