PODCAST

The Voices of MED13L

"The Voices of MED13L" is a podcast dedicated to raising awareness, sharing stories, and building community around MED13L syndrome—a rare genetic disorder that affects development and communication. Each episode highlights the voices of families, experts, and advocates working to understand and navigate life with MED13L. From personal journeys and medical insights to educational tools and research updates, the podcast offers hope, support, and connection for anyone impacted by this rare condition

science life sciences

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30:27

Community Checklist: Make Sure You are Making a...

The Voices of MED13L ·

2025/10/22

Episode Highlights 1️⃣ Seek Support from Specialists – Learn which specialists to see: cardiologist, neurologist, developmental pediatrician, orthopedist, speech, occupational & physical therapists, and feeding specialists. – Contact your local school district early for early intervention services. – Visit our Glossary for common medical and therapy terms: med13l.org/resources – Ensure all providers use the MED13L ICD-10 Code (Q87.85) to correctly document and track care. 2️⃣ Be Count...

en-us

4:57

The Voices of MED13L

The Voices of MED13L ·

2025/10/06

Episode 1: Welcome & Where We’re Headed Hosted by Vanessa Dias & Katie Boychuck In this trailer episode, we introduce the hosts and The MED13L Foundation—how it started, what drives us, and why this podcast exists. Whether you're navigating a new diagnosis, supporting a loved one, or working in research or medicine, this episode offers a personal and accessible introduction to MED13L Syndrome and the global community coming together around it. We share the story of how the Foundation...

en-us

0:40

The Voices of MED13L Coming Soon!

The Voices of MED13L ·

2025/08/24

Officially Launching in October 2025! Welcome to The Voices of MED13L The Voices of MED13L Podcast is brought to you by The MED13L Foundation and co-hosted by Katie Boychuck, Chair, and Vanessa Dias, Vice Chair. Both are parents of children with MED13L, and their personal journeys have set them on a path to push for research, create change for a better future, foster connection within the community, and continue the search for treatments and ultimately a cure. In this podcast, you’ll hear: Up...

en-us

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The Voices of MED13L

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