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Being Rare Podcast
Being Rare Podcast episodes
- LEAP Summit: Session Four - Advocacy and the Legislative Landscape
Session Four of the LEAP into Advocacy Virtual Summit is titled Advocacy and the Legislative Landscape. The session moderator is Shivani Vyas, Host of The Rare Disorder Podcast. The session presenters are Ella Balassa, Patient Advocate & Consultant and Laura Romano, Patient Advocate. The fireside chat includes Ella Balassa, Laura Romano, and Jennifer Harris, Health Policy Advocate at Alabama Arise. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.
---Support this podcast: https://podcasters.spotify.com/pod/show/beingrare/support56 min - Ep 54. One Minute Mondays: Distractions - When "Your" Distractions Cause Someone Else HarmThis One Minute Monday is about distractions. One of my biggest pet peeves is folks on their phones while driving. Distractions can cause injury and harm, not just to ourselves but to those around us. Listen as Sarita shares 60 seconds of Being Rare: Distractions.2 min
- Ep 53. One Minute Monday: Patience - When Traditional Timelines Don't Accurately Measure DevelopmentThis One Minute Monday is about patience. Traditional timelines don't accurately measure developmental milestones - at least not for all children. It's easy to become impatient and discouraged when our [rare] kiddos fall in the delayed development category. Listen to 60 seconds of Being Rare with Patience!2 min
- Ep 52. One Minute Monday: Being Delayed - Delay Is Not DeniedThis One Minute Monday is about being delayed. After traveling several days for business I found myself delayed, stranded, and delayed again. Sometimes the road to our destination presents unforeseen challenges; but a delay is not an automatic denial. Listen to 60 seconds of Being Rare!1 min
- Ep 51. One Minute Monday: Poop - Finding Joy in PoopisodesThis One Minute Monday is about poop, yep, poop! For the past few days, Elijah has kept us in an abundance of poopisodes. His GI system is determined to keep us on our toes and in the bathroom. Some poopisodes are very hard to endure, while others are adventurous and fun. Listen to 60 seconds of Being Rare: Poopisode edition.2 min
- Ep 50. One Minute Mondays: Perception - Perceiving That Your Kid Is A Burden [to Others]This One Minute Monday is about perception. Having a kid who requires a lot of hands-on care can be hard. One of the worse feelings is perceiving that someone [responsible for providing care] doesn't want to be bothered. Listen to 60 seconds of Being Rare: Perception2 min
- Ep 49. Moms & Mental Health: The Importance of Self CareToday’s conversation is a collaboration between the E.WE Foundation's LEAP Program and Being Rare Podcast. We're talking about Moms & Mental Health: The Importance of Self Care. Self-care is taking all the steps you can to take care of your physical health and well-being, including hygiene, nutrition, managing stressors, and seeking medical care if needed. Self-care is important to maintaining a healthy relationship with yourself. Self-care is about the things we can do to look after our own mental health.Our panelists for today’s conversation are:Stephanie Allen, Licensed Professional Counselor & Mental Health Services CoordinatorShane’ Jackson, Coordination of Benefits Analyst & Parent AdvocateDr. Ashley Perkins, Doctor of Pharmacy & Mental Health AdvocateParvathy Krishnan, Global Advocacy Alliance Director & Parent AdvocateStay up to date on current conversations by subscribing to Being Rare wherever you listen to podcasts!The E.WE Foundation is a 501c3 healthcare advocacy organization. Learn more at www.theewefoundation.org.1 hr 1 min
- Ep 48. One Minute Mondays: Shared Spaces - There's Enough Room For Us AllIn this One Minute Monday Sarita talks about shared spaces. Many of us started foundations, podcasts, and blogs because we needed or noticed something missing. In that, this spirit of competitiveness [sometimes] arises creating silent discord among the community - a community otherwise in alignment. The rare space, and any space, can be welcoming and full of love when you go in giving that which you're looking to receive. Listen to 60 seconds of Being Rare: Shared Spaces.2 min
- Ep 47. One Minute Monday: Trust - Learning How to Trust Those Responsible For Your Nonverbal ChildIn this One Minute Monday Sarita talks about trust. Five days a week we send our children to school to be supervised by someone we don't know. They come home talking about their day; all except Elijah. Elijah is small, has limited mobility, and is nonverbal. Because he can't tell us about his day, we have to trust the system and the people responsible for him. Listen to 60 seconds of Being Rare: Trust.2 min
- Ep 46. A Special Mother's Day Edition of the Being Rare PodcastBeing Rare Podcast welcomes Kate Hart for this special Mother's Day edition episode. Kate is a Trisomy 18 Mom and advocate. Listen as Kate shares love and loss for sweet Hannah, her daughter who was diagnosed in utero with Trisomy 18. Hannah passed away after living 54 days.Join the conversation by following Being Rare wherever you listen to your podcast!Connect with us on social media: IG: @beingrarepodcast TW: @beingrarepodEmail us: [email protected]Other ways to connect: linktr.ee/ewefoundation41 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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