Being Rare Podcast

By Sarita Edwards

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 con... more

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FAQs about Being Rare Podcast:

How many episodes does Being Rare Podcast have?

The podcast currently has 124 episodes available.

Being Rare Podcast episodes:

May 31, 2021 Ep 7. Sharing Your Story
In 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!
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28min
May 31, 2021 Family, Faith, & Trisomy 18
In 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.
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Send in a voice message: https://anchor.fm/beingrare/message
Support this podcast: https://anchor.fm/beingrare/support
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37min
May 31, 2021 Surviving Loss
In 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.
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Send in a voice message: https://anchor.fm/beingrare/message
Support this podcast: https://anchor.fm/beingrare/support
...more
32min
May 25, 2021 Ep 6. One Minute Tuesday
In this One Minute Tuesday episode, we talk about feeling isolated and unseen. Listen as we share 60 seconds on relationships!
...more
1min
May 18, 2021 Ep 5. Surviving Loss
In 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!
...more
31min
May 17, 2021 Ep 4. One Minute Mondays - The Choice
In this One Minute Monday, Sarita talks about the choice of responding or dismissing people's questions and stares. Listen as she shares her truth.
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2min
May 11, 2021 Ep 3. One Minute Mondays - FEAR
In this episode, Sarita shares how sick visits can sometime carry overwhelm and fear. Listen as she shares her truth about fear crippling her faith.
...more
2min
May 06, 2021 Ep 2. Special Episode - Sick Days
In 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!
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3min
May 05, 2021 Get To Know Us
In this sequel first episode, Kareem joins Sarita to talk about being rare, how their journey started, and why they started the E.WE Foundation.
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Send in a voice message: https://anchor.fm/beingrare/message
Support this podcast: https://anchor.fm/beingrare/support
...more
15min
May 05, 2021 Being Rare
We 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.
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Send in a voice message: https://anchor.fm/beingrare/message
Support this podcast: https://anchor.fm/beingrare/support
...more
6min

FAQs about Being Rare Podcast:

How many episodes does Being Rare Podcast have?

The podcast currently has 124 episodes available.

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