Ep 106. Being Rare and Black: A Rare Disease Day Exclusive

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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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Non-Profit

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Ep 106. Being Rare and Black: A Rare Disease Day Exclusive

Being Rare Podcast

55 minutes 49 seconds

8 months ago

Ep 106. Being Rare and Black: A Rare Disease Day Exclusive

In this episode of the Being Rare Podcast, Sarita sits down with James Griffin and Genesis Jones, patient advocates and authors. We're talking about navigating life with sickle cell, healthcare bias, stigma, and more!

The books mentioned in this episode can be found on Amazon. Direct links are below.

Breaking Silence: Living with Sickle Cell Anemia by James Griffin III https://a.co/d/3znpc3s

Rebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/3lVQL7Z

Resilient: Reflections of a Sickle Cell Journey (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/73XsFla