Being Rare Podcast

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!

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!

Today's One Minute Monday is about prepping for my first colonoscopy! Listen to 60 seconds of Being Rare!

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.

Making yourself a priority is important to maintaining self care and mental health. Enjoy this sizzle. Catch the full episode on Wednesday, Aug 9.

Today's episode is about choosing to make myself the priority! Enjoy 60 seconds of Being Rare!

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

Today's One Minute Monday is about isolation. A rare mom shared that she attended an in person event for families with her child's diagnosis hoping to connect with other families. Mom said no one approached her and she left feeling more isolated than she did when she arrived. Listen to 60 seconds of Being Rare to hear more!

March is Trisomy Awareness Month! March 18 is World Trisomy 18 Day! In this episode Sarita sits down with two E.WE Foundation partners to discuss the resources and support they provide to Trisomy families. Hear from Sonny Mullen, Help Hope Live and Dr. Deborah Bruns, TRIS Project. Learn more at: Help Hope Live - helphopelive.org TRIS Project - tris.siu.edu E.WE Foundation - theewefoundation.org Be...

In today's One Minute Monday Sarita is airing a public service announcement that bullying, in any form, is not okay! Listen as she shares 60 seconds of Being Rare!

Today's One Minute Monday is about words. On two different occasions, someone dear to me said the word "retarded". They themselves didn't use the word, they shared how someone had used the word in their presence. Hear more in today's One Minute Monday episode! 

Today's One Minute Monday is about community. Sarita spent the past several days in Washington, DC with other rare advocates. She talks about the isolation that comes with receiving a rare diagnosis and how community became family. Listen to 60 seconds of Being Rare!

A raw conversation about race, health, and stigma!   Being Rare Podcast host Sarita Edwards sits down with Stacey Brown, Georgene' Glass, and Dionne Stalling to discuss navigating life with rare disease and as rare disease caregivers, while black. No topic is off limits!   Social media: Stacey Brown: Wombless and Worthy https://www.instagram.com/womblessandworthy/  Georgene' Glass: DreamSickle Kid...

Today's One Minute Monday is about friendship. I saw a post on social media where a mom was looking to hire someone to be her child's friend. Mom thought a friendship job is the only way to get someone to show up when they say they will. Listen to 60 seconds of Being Rare!

Our daughter shared briefly with adults that she felt "left out" after learning of Elijah's diagnosis from relatives. The adults immediately [seemingly] began to judge how we chose to tell our children. Listen as Sarita shares 60 seconds of Being Rare!

Today's One Minute Monday is about collaboration. Sarita was asked to not join a virtual meeting due to conflict of interest. If patients are truly our priority, the mission is connecting patients to resources even if that means referring them to someone else. Someone not wanting you present doesn't mean you don't deserve to be. Listen as Sarita shares 60 seconds of Being Rare!

Today's episode of Being Rare Live is about self care and the importance of prioritizing yourself when navigating a rare disease journey. Being Rare host Sarita Edwards joined by Dr. Aditi Kantipuly, Michelle Fruhshien, and Jeffrey Benton to talk about how you can start your self care routine in as little as 7 minutes in the comfort of your home.    Connect with Sarita on social media @SaritaEdwar...

Today's One Minute Monday is about school support. Students with special health needs have the right to an Individualized Education Plan (IEP) at their school. All stakeholders - parents, educators, administrators - should be on one accord when identifying a student's needs and what the school can provide. We're grateful for Elijah's school team who's helping us help Elijah be the best student he...

Today's One Minute Monday is about selfishness. Elijah's school has this really cool accessibility lane for families transporting children with special health needs. What's uncool is when someone uses the lane as a parking spot, blocking users from passing through. Hear more in today's one minute Monday!

Self care is about being the best version of you. For quite some time, I missed out on the true meaning of self care because I was convinced it had to look a certain way. Self care is not about doing something by yourself. Self care is doing something for yourself. Our self care routines can be different and they can include others. Self care is about taking care of you however you choose to do so...

The new year is about new beginnings, starting over, resolutions, etc. Whatever you call it, it's about resolving to be the best version of yourself, for yourself. The beginning of a new year, and all year long, is not about fixing something broken; it's about changing something that no longer serves you. 

Navigating the holiday season isn't always easy for rare families. We're thankful for our journey and for those we get to navigate it with. Thank you!

October is National Family History Month. In this exclusive Being Rare Podcast *Live we're talking about the importance of knowing your family's health history. In this episode, Sarita is talking with her husband Kareem Edwards and friend Heather Gjesvold about how family diagnoses help them proactively coordinate their own health.   Subscribe to our Being Rare Podcast *Live YouTube channel. Find...

October is National Family History Month. In this exclusive Being Rare Podcast *Live we're talking about the importance of knowing your family's health history. In this episode, Sarita is talking with Maria Della Rocca, Senior Director of Patient Services at Global Genes and Molly Martzke, Senior Program Manager at the National Genetics Education and Family Support Center at Expecting Health.   Su...

In this One Minute Monday episode Sarita talks about a peek-a-boo encounter with a little girl at the grocery store. Listen to 60 seconds of Being Rare!