66 episodes

Being Rare is an online resource hub and community conversations platform. We'll have intimate and sometimes difficult conversations about living with rare disease, disability, medical complexities, and special health needs. Popular for our 1 minute episodes, Being Rare offers insight, perspective, and positive reinforcement. Hosted by Sarita Edwards, a world's top patient expert, award winning advocate, global speaker, and CEO.

Email us podcast@theewefoundation.org.

Follow us on social media!
IG: @beingrarepodcast
FB: @beingrarepodcast

Other ways to connect: linktr.ee/ewefoundation Support this podcast: https://anchor.fm/beingrare/support

Being Rare Podcast Sarita Edwards

    • Business

Being Rare is an online resource hub and community conversations platform. We'll have intimate and sometimes difficult conversations about living with rare disease, disability, medical complexities, and special health needs. Popular for our 1 minute episodes, Being Rare offers insight, perspective, and positive reinforcement. Hosted by Sarita Edwards, a world's top patient expert, award winning advocate, global speaker, and CEO.

Email us podcast@theewefoundation.org.

Follow us on social media!
IG: @beingrarepodcast
FB: @beingrarepodcast

Other ways to connect: linktr.ee/ewefoundation Support this podcast: https://anchor.fm/beingrare/support

    Newborn Screening Awareness: Understanding Baby's First Test

    Newborn Screening Awareness: Understanding Baby's First Test

    September is Newborn Screening Awareness Month. Newborn screening is a public health service that screens babies for some conditions. Today we're talking about newborn screening awareness and the importance of parent education. Joining the conversation is a Mom, Briyana Brown, parent to a 4 year old and a 1 year old, and Natasha Bonhomme, the driver at Expecting Health, a leading resource in newborn screening education. 



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    • 18 min
    One Minute Monday : Thoughtful Curiosity - Embracing What Makes Us Different

    One Minute Monday : Thoughtful Curiosity - Embracing What Makes Us Different

    A mom's kind interest in Elijah is the prompt for today's one minute Monday! This One Minute Monday is about thoughtful curiosity. Elijah isn't your typical 5 year old so, to us, sharing his "differences" is part of our awareness. Listen thoughtfully to 60 seconds of Being Rare!


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    • 1 min
    One Minute Monday - Intentions: Learning To Mind Our Business

    One Minute Monday - Intentions: Learning To Mind Our Business

    This One Minute Monday is about Intentions. Sometimes our best intentions can be both harmful and hurtful especially when it's advice we haven't been asked to give. Listen to 60 seconds of Being Rare!

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    • 1 min
    One Minute Monday: Germs - Keep Your Germs To Yourself

    One Minute Monday: Germs - Keep Your Germs To Yourself

    Today's One Minute Monday is about germs. Germs are unavoidable and everywhere. It's our job to make sure "our" germs aren't contagious or a threat to ourselves or others. Prepare for them and control the spread. Listen to 60 seconds of Being Rare!


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    • 1 min
    One Minute Monday: Transitions - When Something Difficult Turns Out Good

    One Minute Monday: Transitions - When Something Difficult Turns Out Good

    This One Minute Monday is about transitions. A few weeks ago Elijah started Kindergarten. Transitioning to this new environment was probably more difficult for us as parents than it actually was for Elijah. Listen to 60 seconds of transitioning and new experiences. 


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    • 1 min
    One Minute Monday: Take A Break - You Deserve It

    One Minute Monday: Take A Break - You Deserve It

    This One Minute Monday is about taking a break. Six weeks ago I had a major surgery that removed me from my normal activities. Today I had my 2nd post-op appointment; and I have been cleared and released to ease back into my normal routines. Taking a break is critical to our overall health and well-being. Listen as I share 60 seconds of taking a break! 


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    • 1 min