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Being Rare Podcast
Being Rare Podcast episodes
- Ep 7. Sharing Your StoryIn this Mother's Day episode Sarita sits down with Effie Parks, host of Once Upon A Gene Podcast. Effie shares how she started her rare journey with son, Ford and her why behind starting her podcast. Listen as Sarita and Effie talk about finding your people, developmental school for their kiddos, and the power of sharing your story!28 min
- Family, Faith, & Trisomy 18In this episode Sarita talks with Beverly Jacobson about balancing family, faith, and a Trisomy 18 diagnosis. To learn more about Beverly's new nonprofit, Verity's Village, find them on Facebook and Instagram.---Send in a voice message: https://anchor.fm/beingrare/messageSupport this podcast: https://anchor.fm/beingrare/support37 min
- Surviving LossIn this episode, Sarita is joined by Allison Bones, CEO & President at T.E.A.M. 4 Travis. Listen as Allison shares her journey of surviving loss, overcoming grief, and finding her tribe. To learn more about T.E.A.M 4 Travis visit www.team4travis.org.---Send in a voice message: https://anchor.fm/beingrare/messageSupport this podcast: https://anchor.fm/beingrare/support32 min
- Ep 6. One Minute TuesdayIn this One Minute Tuesday episode, we talk about feeling isolated and unseen. Listen as we share 60 seconds on relationships!1 min
- Ep 5. Surviving LossIn this special edition Mother's Day episode, Sarita is talking with Allison Bones, President & CEO at T.E.A.M. 4 Travis. Allison shares her journey of extreme loss after losing her husband to cancer and her son to an undiagnosed rare condition. Listen as Allison shares her story!31 min
- Ep 4. One Minute Mondays - The ChoiceIn this One Minute Monday, Sarita talks about the choice of responding or dismissing people's questions and stares. Listen as she shares her truth.2 min
- Ep 3. One Minute Mondays - FEARIn this episode, Sarita shares how sick visits can sometime carry overwhelm and fear. Listen as she shares her truth about fear crippling her faith.2 min
- Ep 2. Special Episode - Sick DaysIn this episode, Sarita talks about the sometimes automatic "death conversation" that comes with taking a rare kiddo to an unplanned doctor's appointment. Listen as she shares her experience with sick appointments!3 min
- Get To Know UsIn this sequel first episode, Kareem joins Sarita to talk about being rare, how their journey started, and why they started the E.WE Foundation.---Send in a voice message: https://anchor.fm/beingrare/messageSupport this podcast: https://anchor.fm/beingrare/support15 min
- Being RareWe are excited to officially launch our first episode. In this episode, listen as Sarita shares information about their rare journey and what you can expect from the Being Rare podcast.---Send in a voice message: https://anchor.fm/beingrare/messageSupport this podcast: https://anchor.fm/beingrare/support6 min
About Being Rare Podcast
From the publisher's feed
The Being Rare podcast intersects rare disease, leadership, and systems change. It examines how policy, clinical practice, innovation, and institutional decision-making shape the lived experience of being rare, whether as a patient, caregiver, clinician, advocate, or leader.
Hosted by Sarita Edwards, Being Rare extends beyond storytelling. Each conversation brings together diverse perspectives to challenge assumptions, uncover blind spots, and drive more effective, equitable outcomes.
Follow Being Rare today, wherever you stream your podcasts!
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