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Being Rare Podcast
Being Rare Podcast episodes
- Ep 89. 9/11 #podcast #911 #beingrare
Today's One Minute Monday is about 9/11. As we celebrate my husband's birthday, we recognize how difficult today is for so many others! We're thinking of you!
1 min - Ep 88. A Poor Newborn Screening ExperienceThis Being Rare Podcast episode is continuing the conversation about newborn screening and how The Edwards did not receive the screening test for their son, Elijah.26 min
- Ep 87. Our Newborn Was Refused Newborn ScreeningSeptember is Newborn Screening Awareness Month! In this Being Rare Podcast episode, Sarita talks about the healthcare system refusing them newborn screening for their newborn.11 min
- Ep 86. One Minute Monday - Peer Support #podcast #oneminute #peersupport #supportgroup
This One Minute Monday is about peer support. We hosted our first virtual peer support group a few days ago. Listen to 60 seconds of Being Rare to hear how it went.
2 min - Ep 85. A Church ExperienceIn this Being Rare Podcast episode Sarita talks about an experience they had at a local church's kid zone. Tune in to hear what happened!16 min
- Ep 84. The Small Group - #Inclusion #podcast #raredisease #church #smallgroup
Today's One Minute Monday is about inclusion. Elijah participated in his first small group at church.
Listen to 60 seconds of Being Rare to hear about the experience!1 min - Ep 83. Summer Road TripIn today's Being Rare Podcast episode, Kareem and Sarita share details about navigating a summer road trip with their medically complex child. Listen as they share the trickiness to coordinating rest breaks and nutritional needs, all while having fun!21 min
- Ep 82. One Minute Monday - Preparation #podcast #selfcare #mentalhealth #beingrare
Today's One Minute Monday is about prepping for my first colonoscopy! Listen to 60 seconds of Being Rare!
2 min - Ep 81. Ten Minutes of Sarita - Full episodeSarita, girl, where you been? This episode gives insight into the recent Being Rare Podcast hiatus, new format for the show, and peek into Sarita's self care regime.10 min
- Ep 81 #sizzle - Prioritizing Self Care #podcast #beingrare #selfcare #mentalhealth
Making yourself a priority is important to maintaining self care and mental health. Enjoy this sizzle. Catch the full episode on Wednesday, Aug 9.
2 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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