Being Rare is a community conversations platform bringing awareness to several different topics and how they relate to the are disease and special needs communities. Being Rare is hosted by Sarita Edwards, wife and mom to 5, one having rare disease Edwards Syndrome, commonly known as Trisomy 18. From time-to-time you'll hear from Kareem Edwards stepping in as co-host.
In this episode Sarita is joined by Licensed Master Social Worker Ebone Kimber to discuss bedside manner or the lack thereof. Listen as Ebone shares strategy nuggets for professionals and families. Join us for more conversation on Wednesday, July 14th at 10:00am, live on Facebook and Zoom. Learn more at theewefoundation.org.
In this special Father's Day episode, Sarita's husband Kareem sits down with John Hart, Dadvocate to Harley, a 5 year old with Full Trisomy 18. Listen as John shares their journey of living with a rare disease.
Sarita's husband Kareem takes over Being Rare Studios in a two-part special Father's Day episode. In this episode Kareem sits down with Aaron Ludwig, rare Dadvocate to Mimi, his 3 year old daughter living with Full Trisomy 18. Listen as Aaron shares their Trisomy 18 journey.
In this final Mother's Day episode, Sarita talks with Effie Parks, podcast host at Once Upon A Gene about finding our people, sending our rare kiddos to school, and the power in sharing our stories. To learn more about Effie and her podcast, visit her online at EffieParks.com.
In this episode Sarita talks with Beverly Jacobson about balancing family, faith, and a Trisomy 18 diagnosis. To learn more about Beverly's new nonprofit, Verity's Village, find them on Facebook and Instagram.
In this episode, Sarita is joined by Allison Bones, CEO & President at T.E.A.M. 4 Travis. Listen as Allison shares her journey of surviving loss, overcoming grief, and finding her tribe. To learn more about T.E.A.M 4 Travis visit www.team4travis.org.
Being Rare is a community conversations platform bringing awareness and exposure to several different topics and how they relate to rare disease and the special needs community. Stay up to date on current conversations by subscribing now!