Hosted by Sarita Edwards · 🇺🇸 US · EN · 111 episodes
Established thought leaders with verified media credentials.
Hosted by Sarita Edwards, Being Rare examines how policy, clinical practice, innovation, and systems shape the lived experience of rare disease. Patient experience is treated as expertise, guiding conversations with advocates, clinicians, researchers, and policymakers. Earlier episodes reflect formative discussions; newer episodes focus on systems, decision-making, and real-world impact. Explore the latest episodes to hear how lived experience, policy, and innovation intersect—and see how Being Rare shapes real-world change in rare disease ecosystems.
Sarita Edwards hosts Being Rare Podcast, a business show with 111 episodes published.
In this episode of the Being Rare Podcast, host Sarita Edwards sits down with Michael Mantz, a business owner, writer, and advocate living with Ataxia SCA15, a rare and progressive neurodegenerative disorder. From his fo
In this episode, Sarita sits down with Royce Robertson—a husband, father, patient, and advocate. Royce shares his personal journey of being misdiagnosed and nearly undergoing a critical procedure before discovering he ha
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 Na
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! Th
In this episode of the Being Rare Podcast, Sarita sits down with NASM certified trainer and professional bodybuilder, Coach Jeff Benton to talk about the value of prioritizing self care into your daily routine. Intereste
In this episode, Sarita shares how self care became a forced priority. A planned medical procedure uncovered a near death health episode. Tune in to hear how Sarita transformed her health and changed her life. Watch the
In this Being Rare Podcast episode, Sarita is joined by Dr. Shane' Jackson, a wife, mom, minister, youth director, and two-time author to talk about transitioning from childhood to adulthood while navigating a medically
In this episode, Sarita is joined by her daughter Rian to talk about their 2025 ins and outs, being rare edition! Listen in to hear what they're leaving in 2024 and all that's welcomed in 2025.
In this episode, Sarita talks about - spending Saturday at the US Space and Rocket Center in Huntsville, AL supporting the Myositis Moonwalk - Mother's Day happening Sunday, May 12 - May being Mental Health Awareness Mon
In this episode, Sarita talks about black maternal health and child abuse neglect and prevention. April 11-17 is Black Maternal Health Week. Black women are three times more likely to die from a pregnancy-related cause t
In this episode of the Being Rare Podcast, Sarita kicks off the conversation celebrating the E.WE Foundation's 5th year anniversary and why she and her husband Kareem decided to establish the foundation, which leads into
There has been a lot of misinformation circulating about Trisomy 18 and its impact on unborn babies and pregnant moms. In this episode, Sarita challenges the fatal narrative and shares statistics about pregnancy-related
Trisomy Awareness Month & Women's History Month Sarita Edwards, the host of the Being Rare Podcast, welcomes listeners to a special episode dedicated to Trisomy Awareness Month and Women's History Month. She shares the s
This episode of the Being Rare Podcast is filled with laughter! Listen in as Sarita and her husband, Kareem talk about navigating the holiday season and kicking off another new year! Watch on YouTube! https://buff.ly/42f
#happynewyear #podcast #update In this episode of the Being Rare Podcast Sarita shares new fitness goals, a holiday snippet, and an announcement about an upcoming episode.
The holiday hustle might not align with our individual health care needs. In this mini episode Sarita shares a few tips that might help with navigating the holiday season. Don't forget to subscribe to Being Rare Podcast
In this Being Rare Podcast episode Sarita talks about grief and how it can unexpectedly overwhelm you.
October is Know Your Family History Month. Being Rare Podcast host Sarita Edwards is joined by today's co-hosts Jasmine Hightower and Hana Faulds to discuss the importance of knowing family health history and how medical
In this episode Sarita is joined by Swapna Kakani, Jasmine Hightower, and briefly by Brooke Thomas to talk about newborn screening, state advocacy, and the impact NBS has on babies and their parents. *Due to external tec
Who's responsible for providing parents newborn screening information and when should they do it? This episode of the Being Rare Podcast is about the importance of parent education with regard to newborn screening and wh
James Griffin
NSW Liberal MP, former Environment and Heritage Minister, current Shadow Minister for Energy, Climate Change, Digital AI, and Investment · Auto Shop Marketing Pros
1 appearance on this show
Jeff Benton
NASM certified trainer and professional bodybuilder · Paragon Performance Evolution
1 appearance on this show
Sarita
graphic designer student · Meta
1 appearance on this show
Shane Jackson
President · Jackson Healthcare
1 appearance on this show
Kira Dineen
prenatal genetic counselor and genetics podcaster
1 appearance on this show
Brooke Thomas
costume shop assistant · Thomas Gold Solutions
1 appearance on this show
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Being Rare Podcast is hosted by Sarita Edwards. The show is categorised under business (non-profit) and has published 111 episodes.
Being Rare Podcast has published 111 episodes.
Being Rare Podcast regularly covers business, non-profit. It sits in the business category, with a non-profit focus.
Being Rare Podcast is accessible for guests with genuine business expertise. A personalised, episode-aware pitch will still outperform a generic one every time.
Being Rare Podcast hasn't explicitly signalled guest openness in recent episodes. That doesn't rule out pitching. your hook just needs to be especially compelling and relevant to their recent content.
Episodes of Being Rare Podcast average 31 minutes. a focused format where a clear narrative arc and tight preparation matter most.
Our data rates Being Rare Podcast's guest bar at 80/100 (Premium tier). Established thought leaders with verified media credentials. Sign in to PitchCentric to see how your own Pod Score compares against this show.
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