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New to The Rare Remix? Start here. Listen to insightful stories from podcast guests or browse a blog post curated by experience to help you find a potential solution for your family. Let’s learn, adapt, and thrive together.
Get to Know Our Family & Story
Begin with Episode 01 and hear how it all started, and how we got to where we are today.
Most Helpful for New Diagnosis
The essential episodes for families who are navigating a life-changing diagnosis.
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Check out episodes that touch on school, IEPs, medicaid, waivers, advocacy and more.
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Episode Archive
Episode 02 - Rett Syndrome: A Conversation with Karen
In Episode 2, we sit down with Karen, a mother whose daughter Lynzie was diagnosed with Rett syndrome in 1999. Karen shares her family's journey through diagnosis, advocacy, respite care, and the challenges of planning for independence. From annual cruises and hard-won milestones to finding support before the days of social media, this conversation is filled with wisdom, honesty, and hope for families navigating life with a rare disease.
Episode 01 - Introducing The Rare Remix Podcast
In the first episode of The Rare Remix Podcast, we're sharing our story. You'll learn about Ava's Rett Syndrome diagnosis, how our lives changed overnight, and the journey that inspired us to create Rare Remix. We discuss the challenges, lessons, and unexpected blessings we've experienced along the way, and why we're passionate about helping other families feel informed, supported, and less alone.
Have a Story to Share?
We’re always looking for parents, caregivers, advocates, medical professionals, and disability community leaders with honest stories and helpful insight to share.
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