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Being Rare Podcast
Sarita Edwards
111 episodes
6 days ago
Hosted by rare disease advocate Sarita Edwards, Being Rare is a talk radio–style podcast that explores the issues shaping the rare disease and health equity landscape. Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!
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All content for Being Rare Podcast is the property of Sarita Edwards and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Hosted by rare disease advocate Sarita Edwards, Being Rare is a talk radio–style podcast that explores the issues shaping the rare disease and health equity landscape. Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!
Show more...
Non-Profit
Business
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Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report
Being Rare Podcast
42 minutes 46 seconds
6 months ago
Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report

In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss the Inequities in the Rare Disease Community Report completed in partnership with the National Organization for Rare Disorders (NORD).

This research involved over 2,800 participants and sheds light on the barriers faced by underrepresented patients with rare diseases.

Tune in as we delve into this groundbreaking national survey, while offering critical insights into healthcare access challenges.

Learn more about RDDC and NORD:

RDDC at rarediseasediversity.org

NORD at rarediseases.org

Being Rare Podcast
Hosted by rare disease advocate Sarita Edwards, Being Rare is a talk radio–style podcast that explores the issues shaping the rare disease and health equity landscape. Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!