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

Category

Business

Podcast website

www.theewefoundation.org

Latest episode

Oct 30, 2025

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Episodes

Ep 35. One Minute Monday - Being Fulfilled 21.02.2022

In this One Minute Monday episode Sarita talks about being fulfilled. We all take on new projects or tasks with the hope of making something or someone better. But what happens when the projects and tasks no longer fulfill us? Listen as Sarita shares 60 seconds of Being Rare!

Ep 34. One Minute Monday - Feeling Rushed 14.02.2022

In this One Minute Monday episode Sarita talks about feeling rushed. The panic of being late can be overwhelming and distracting. Listen to 60 seconds of realizing it is okay to slow down and potentially arrive late..

Ep 33. One Minute Mondays - Compromise 08.02.2022

In this One Minute Monday episode Sarita talks about compromise. At some point we all compromise - from what to eat - to - which movie to watch. Compromise can be healthy but some things are off limits.. Listen as Sarita shares 60 seconds of Being Rare!

Ep 32. One Minute Mondays - Balance 01.02.2022

In this One Minute Monday episode Sarita talks about balance. Life will always toss us some unexpected adventures; but we're in charge of the weight we choose to carry and the weight we choose to let go. Listen as Sarita talks about finding balance.

Ep 31. One Minute Mondays - Unexpected 04.01.2022

In this One Minute Monday episode Sarita talks about when unexpected things happening. Listen to 60 seconds of Being [unexpectedly] Rare.

Ep 30. One Minute Mondays - Resolutions 28.12.2021

In this One Minute Monday Sarita talks about resolutions. The New Year has always been a time for change. The 10-to-1 countdown is the end of someone's "old" and the start of someone's "new". Listen to 60 seconds of Being Rare, resolutions.

Ep 29. One Minute Mondays - Gratitude 21.12.2021

In this One Minute Monday Sarita talks about gratitude. Some days gratitude is automatic; other days gratitude seems to be out of reach. Listen to 60 seconds of Being Rare, with gratefulness!

Ep 28. Saying No - Repod 14.12.2021

In this One Minute Monday Repod Sarita talks about saying no. With the holidays upon us it's important to know "your" limits. Listen to 60 seconds of Being Rare, on the road!

Ep 27. One Minute Mondays - Emotions 07.12.2021

In this One Minute Monday Sarita talks about emotions and how we're in charge of how we choose to handle them. Listen as she shares 60 seconds of Being Rare, on the road!

Ep 26. The Choice - Repod 30.11.2021

Holidays aren't "happy times" for everyone. A lot of folks are [still] struggling with pandemic life, especially those juggling rare conditions, medical complexities, and mental health challenges. Be conscious of what you say and how you say it. Be considerate of others and what they may be going through!  In this One Minute Monday Sarita talks about making the choice to be kind, to others and you...

Ep 25. One Minute Mondays - Being Thankful 23.11.2021

In this One Minute Monday Sarita talks about being thankful! Listen as she shares 60 seconds of gratitude for her community, social media tribe, and digital family!

Ep 24. One Minute Mondays - Patience 15.11.2021

In this One Minute Monday Sarita talks about patience, or the lack thereof, when it comes to the school carline. Listen as she shares 60 seconds of Being Rare with a wheelchair!

Ep 23. One Minute Mondays - Being Guarded 08.11.2021

In this One Minute Monday Sarita talks about being guarded when it comes to Elijah's care. Listen as she shares 60 seconds of Being Rare.

Ep 22. One Minute Mondays - Differences 01.11.2021

In this One Minute Monday Sarita talks about embracing differences! Listen as she shares 60 seconds of Being Rare!

Ep 21. One Minute Monday - Opportunities 14.09.2021

In this One Minute Monday Sarita talks about taking the opportunity to showcase the coolness of disability. Listen to 60 seconds of Being Rare.

Ep 20. One Minute Tuesday - Rest 07.09.2021

In this One Minute Tuesday Sarita talks about taking time to rest! Listen as she shares 60 seconds of Being Rare.

Ep 19. One Minute Mondays - Inclusion 30.08.2021

In this One Minute Monday Sarita talks about finding a birthday party invite in Elijah's backpack! Listen as she shares her appreciation for his being included.

Ep 18. One Minute Monday - Support 13.07.2021

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

Ep 17. Supportive Adult Series: Extended Bedside Manner 08.07.2021

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.

Ep 16. One Minute Monday - Amazement 06.07.2021

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

Ep 15. One Minute Mondays - Being Relatable 29.06.2021

In this One Minute Monday, Sarita talks about the relatable journey of being rare. Listen as she shares 60 seconds of being rare.

Ep 14. Father's Day Takeover - Part Two 24.06.2021

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.

Ep13. Father's Day Takeover - Part One 22.06.2021

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.

Ep 12. One Minute Tuesday - Saying No 22.06.2021

In this One Minute Tuesday, Sarita talks about saying no to invites. Listen as she shares 60 seconds of Being Rare.

Ep 11. One Minute Tuesday - Expectations 15.06.2021

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

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