Being Rare Podcast - podcast cover

Being Rare Podcast

Sarita Edwardswww.theewefoundation.org
Hosted by Sarita Edwards, Being Rare highlights the unique perspectives of individuals living with rare diseases. Through intimate—and sometimes difficult—conversations, we explore the challenges and triumphs of navigating everyday life with a rare diagnosis. Popular for our one-minute episodes, this talk radio-style platform addresses critical issues such as health equity, access to care, and mental health. We're not just patient stories, we're the patient experience! Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!
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Episodes

Ep 18. One Minute Monday - Support

In this One Minute Monday Sarita talks about being the giver and receiver of support. Listen to 60 seconds of being rare.

Jul 13, 202152 secEp. 18

Ep 17. Supportive Adult Series: Extended Bedside Manner

In this episode Sarita is joined by Licensed Master Social Worker Ebone Kimber to discuss bedside manner or the lack thereof. Listen as Ebone shares strategy nuggets for professionals and families. Join us for more conversation on Wednesday, July 14th at 10:00am, live on Facebook and Zoom. Learn more at theewefoundation.org.

Jul 08, 202116 minEp. 17

Ep 16. One Minute Monday - Amazement

In this One Minute Monday Sarita talks about Elijah amazing himself with sound! Listen as she shares 60 seconds of being rare.

Jul 06, 202157 secEp. 16

Ep 14. Father's Day Takeover - Part Two

In this special Father's Day episode, Sarita's husband Kareem sits down with John Hart, Dadvocate to Harley, a 5 year old with Full Trisomy 18. Listen as John shares their journey of living with a rare disease.

Jun 24, 202133 minEp. 14

Ep13. Father's Day Takeover - Part One

Sarita's husband Kareem takes over Being Rare Studios in a two-part special Father's Day episode. In this episode Kareem sits down with Aaron Ludwig, rare Dadvocate to Mimi, his 3 year old daughter living with Full Trisomy 18. Listen as Aaron shares their Trisomy 18 journey.

Jun 22, 202143 minEp. 13

Ep 11. One Minute Tuesday - Expectations

On this One Minute Tuesday episode Sarita talks about expectations from healthcare professionals. Listen as she shares 60 seconds of Being Rare.

Jun 15, 20211 minEp. 11

Ep 9. A Journey of Faith

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.

Jun 01, 202135 minEp. 9

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!

May 31, 202128 minEp. 7

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!

May 25, 20211 minEp. 6

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!

May 18, 202130 minEp. 5

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.

May 17, 20211 minEp. 4

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.

May 11, 20211 minEp. 3

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!

May 06, 20212 minEp. 2

Ep 1. One Minute Monday - ACCESSIBILITY

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!

May 03, 20211 minSeason 1Ep. 1
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