In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss the Inequities in the Rare Disease Community Report completed in partnership with the National Organization for Rare Disorders (NORD). This research involved over 2,800 participants and sheds light on the barriers faced by underrepresented patients with rare diseases. Tune in as we delve into this groundbreaking national survey, while offering critical insights into...
Apr 24, 2025•43 min•Ep. 107
In this episode of the Being Rare Podcast, Sarita sits down with James Griffin and Genesis Jones, patient advocates and authors. We're talking about navigating life with sickle cell, healthcare bias, stigma, and more! The books mentioned in this episode can be found on Amazon. Direct links are below. Breaking Silence: Living with Sickle Cell Anemia by James Griffin III https://a.co/d/3znpc3s Rebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection) by Genesis Jones htt...
Mar 01, 2025•56 min
In this episode of the Being Rare Podcast, Sarita sits down with NASM certified trainer and professional bodybuilder, Coach Jeff Benton to talk about the value of prioritizing self care into your daily routine. Interested in personal training or coaching? In-person and virtual options available. Personal instruction. Nutrition monitoring. One-on-one or group. Bodybuilding contest prep and coaching also available. Contact Coach Jeff to learn more: Email: jzb0149@auburn.edu Instagram: @the_eclipse...
Feb 06, 2025•37 min
In this episode, Sarita shares how self care became a forced priority. A planned medical procedure uncovered a near death health episode. Tune in to hear how Sarita transformed her health and changed her life. Watch the live recording: https://youtu.be/B9LKxNeZgq0
Jan 30, 2025•22 min
In this Being Rare Podcast episode, Sarita is joined by Dr. Shane' Jackson, a wife, mom, minister, youth director, and two-time author to talk about transitioning from childhood to adulthood while navigating a medically complex diagnosis. Dr. Jackson's new book “A JOURNEY TO BEING” SAVED. HEALED. EVOLVING.: 30 DAYS OF DEVOTIONAL IMPARTATION is available for purchase on Amazon.
Jan 23, 2025•1 hr 35 min
In this episode, Sarita is joined by her daughter Rian to talk about their 2025 ins and outs, being rare edition! Listen in to hear what they're leaving in 2024 and all that's welcomed in 2025.
Jan 16, 2025•52 min
In this episode, Sarita talks about - spending Saturday at the US Space and Rocket Center in Huntsville, AL supporting the Myositis Moonwalk - Mother's Day happening Sunday, May 12 - May being Mental Health Awareness Month - the E.WE Foundation's new Mental Health Training and Certification Program- the return of One Minute Mondays - and the passing of the Zachary Thomas Newborn Screening Act in Alabama. Tune in to check out the highlights and updates!...
May 04, 2024•9 min
In this episode, Sarita talks about black maternal health and child abuse neglect and prevention. April 11-17 is Black Maternal Health Week. Black women are three times more likely to die from a pregnancy-related cause than white women. The month of April is dedicated to Child Abuse and Neglect Prevention. Children with disabilities are at least three times more likely to be abused or neglected than their peers without disabilities. Tune in as Sarita shares stats, a personal experience, and reso...
Apr 19, 2024•11 min
In this episode of the Being Rare Podcast, Sarita kicks off the conversation celebrating the E.WE Foundation's 5th year anniversary and why she and her husband Kareem decided to establish the foundation, which leads into the challenges of micro-small nonprofit funding. Sarita shares the Trisomy 18 Newborn Screening Participation Research Survey hosted by the E.WE Foundation and led by student interns Harlie Williams and Michael Yun. The survey is for families with living or unalive children who ...
Apr 06, 2024•12 min
There has been a lot of misinformation circulating about Trisomy 18 and its impact on unborn babies and pregnant moms. In this episode, Sarita challenges the fatal narrative and shares statistics about pregnancy-related deaths. Sarita also sits down with Kira Dineen, prenatal genetic counselor and genetics podcaster at DNA Today to discuss the information being shared with families who receive a diagnosis of Trisomy 18 for their unborn child. Sarita and Kira also talk about Kira's podcast and ho...
Mar 22, 2024•24 min
Trisomy Awareness Month & Women's History Month Sarita Edwards, the host of the Being Rare Podcast, welcomes listeners to a special episode dedicated to Trisomy Awareness Month and Women's History Month. She shares the significance of March as a month to raise awareness about Trisomy conditions, particularly Trisomy 18, and highlights the theme of Women's History Month: Women Who Advocate for Equity, Diversity, and Inclusion. Learn more: theewefoundation.org/awareness Segment 1: Elijah News ...
Mar 08, 2024•22 min•Ep. 97
This episode of the Being Rare Podcast is filled with laughter! Listen in as Sarita and her husband, Kareem talk about navigating the holiday season and kicking off another new year! Watch on YouTube! https://buff.ly/42fK81f
Jan 30, 2024•24 min
#happynewyear #podcast #update In this episode of the Being Rare Podcast Sarita shares new fitness goals, a holiday snippet, and an announcement about an upcoming episode.
Jan 11, 2024•6 min
The holiday hustle might not align with our individual health care needs. In this mini episode Sarita shares a few tips that might help with navigating the holiday season. Don't forget to subscribe to Being Rare Podcast and follow along wherever you listen to your podcasts.
Dec 04, 2023•1 min
In this Being Rare Podcast episode Sarita talks about grief and how it can unexpectedly overwhelm you.
Nov 04, 2023•20 min
October is Know Your Family History Month. Being Rare Podcast host Sarita Edwards is joined by today's co-hosts Jasmine Hightower and Hana Faulds to discuss the importance of knowing family health history and how medical diagnoses can impact generational health legacy. Connect with our hosts by visiting youtube.com/@theewefoundation/podcasts! Watch the live recording on YouTube! Find more episodes wherever you stream your podcasts!
Oct 27, 2023•56 min
In this episode Sarita is joined by Swapna Kakani, Jasmine Hightower, and briefly by Brooke Thomas to talk about newborn screening, state advocacy, and the impact NBS has on babies and their parents. *Due to external technical difficulties Brooke's audio and video did not record to this episode. There is a brief moment of silence.
Sep 29, 2023•49 min
Who's responsible for providing parents newborn screening information and when should they do it? This episode of the Being Rare Podcast is about the importance of parent education with regard to newborn screening and what it means for newborns and their parents.
Sep 14, 2023•9 min
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!
Sep 11, 2023•41 sec
This 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.
Sep 07, 2023•26 min
September is Newborn Screening Awareness Month! In this Being Rare Podcast episode, Sarita talks about the healthcare system refusing them newborn screening for their newborn.
Sep 01, 2023•10 min
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.
Aug 28, 2023•1 min
In 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!
Aug 24, 2023•15 min•Season 3Ep. 4
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!
Aug 21, 2023•1 min
In 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!
Aug 16, 2023•21 min•Season 3Ep. 3
Today's One Minute Monday is about prepping for my first colonoscopy! Listen to 60 seconds of Being Rare!
Aug 14, 2023•1 min
Sarita, 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.
Aug 09, 2023•10 min•Season 3Ep. 2
Making yourself a priority is important to maintaining self care and mental health. Enjoy this sizzle. Catch the full episode on Wednesday, Aug 9.
Aug 08, 2023•1 min
Today's episode is about choosing to make myself the priority! Enjoy 60 seconds of Being Rare!
Aug 07, 2023•1 min
We kicked off Season 3 of the Being Rare Podcast back in May... Here's our first official episode and why it took us so long to upload it! Follow along for more! #BeingRare #Podcast #podcaster
Jul 03, 2023•3 min
