Front Page | The Rare Life

Recent Episodes

Episode

Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD

Of all the skills we have to learn as parents of medically complex children, one of the most difficult is often just finding a medical team that you trust, and that trusts and respects you as well.

Episode

Ep 118: Medical Organization Hacks | Supplies + Info + Appointment Scheduling

When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments scheduled, and the mental energy that goes into just staying on top of life would be one of the biggest challenges.

Episode

Ep. 117: Traumaversaries and other triggers to our trauma w/ Hailey Adkisson and Madhura Katre

Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to medical trauma that our families have experienced.

75+ Messages of Gratitude

"Girl. Your podcast is changing my life. Thank you. My husband and I both started listening and it feels like our only source of feeling understood. "

@Meg.Dawley (Listener and Parent)

"As a first time mum of a rare babe I’m still finding my feet. And listening to you and others who are little further down the path of this journey is so helpful."

Halley @theo_and_dougie (Listener and Parent)

"Your podcast has shown me this beautiful healing that comes through vulnerability and connection."

Seeley Almeda @sleeley_lake (Listener and Parent)

"Thank you so much for this podcast. It is such a joy and encouragement to listen to."

@Magdelena_Shultz (Listener and Parent)

"I am in nursing school. I LOVE your podcast as a way to connect with how some of the families and caregivers feel."

@Amberpdidit (Listener and nurse)