Sarita Edwards

Being Rare Podcast

Business EN ↓ 111 episodes

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.

Author

Sarita Edwards

Episodes

Ep 10. One Minute Monday - Resentment 08.06.2021 1:07

In this One Minute Monday episode, Sarita talks about shifting from resentment to a place of gratitude.

Ep 9. A Journey of Faith 01.06.2021 35:15

In this special Mother's Day edition Sarita sits down with Beverly Jacobson, wife and mom to 9 children. Beverly shares how her faith helped her better accept her daughter's rare diagnosis. Listen as Beverly and Sarita talk about family, faith, and Beverly's new nonprofit, Verity's Village.

Ep 8. One Minute Mondays - Balance 31.05.2021 1:07

In this One Minute Monday, Sarita talks about balancing family and self care.

Ep 7. Sharing Your Story 31.05.2021 27:30

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!

Ep 6. One Minute Tuesday 25.05.2021 1:00

In this One Minute Tuesday episode, we talk about feeling isolated and unseen. Listen as we share 60 seconds on relationships!

Ep 5. Surviving Loss 18.05.2021 30:26

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!

Ep 4. One Minute Mondays - The Choice 17.05.2021 1:07

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.

Ep 3. One Minute Mondays - FEAR 11.05.2021 1:10

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.

Ep 2. Special Episode - Sick Days 06.05.2021 2:24

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!

Ep 1. One Minute Monday - ACCESSIBILITY 03.05.2021 1:03

Kareem & Sarita's eldest kid graduated college over the weekend. It was their first public event using Elijah's wheelchair. In this one-minute Monday Sarita shares their experience with using the accessibility entrance for the first time. Listen as she shares 60 seconds of being rare!

Trailer 02.05.2021 0:36

Being Rare Podcast - Show Trailer