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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. Whether you're a parent, professional, or simply curious, "The Voices of MED13L" is a space to listen, learn, and stand together in the face of the unknown.
Visit us at www.med13l.org
Follow us on Instagram & Facebook: @med13lfoundation
X: @med13l_fdn
The Voices of MED13L
Intro to Growing Up With MED13L
Welcome to The Voices of MED13L, the official podcast of the MED13L Foundation.
In this special trailer, host Vanessa Dias introduces Growing Up with MED13L — a new ongoing series that explores what life looks like for individuals with MED13L at every age and stage.
Each episode features a family from our global community, sharing their lived experiences — from early diagnosis to daily routines, school transitions, therapy progress, and life as a teen or young adult.
The series isn’t chronological, because our journeys are not the same. Whether you’re hearing from a family whose child is close in age to yours or several years ahead, these conversations offer connection, perspective, and hope.
Together, we’ll highlight the incredible resilience, progress, and love that define growing up with MED13L — and remind every listener that they are not alone.
🎧 This is Growing Up with MED13L: Life at Every Age.
Resources
Be Counted in the 2025 Census: med13l.org/research-hub/join-med13l-research-opportunities/med13l-registry-enrollment
Community Checklist: Google Drive Link
CRID: thecrid.org
Citizen Health: citizen.health/partners/med13l-foundation
Rare-X: rare-x.org/med13l
Website: med13l.org
Facebook: facebook.com/med13lfoundation
Instagram: instagram.com/med13lfoundation
YouTube: youtube.com/@med13lfoundation/videos
Glossary: med13l.org/knowledge-base/glossary
Music Credit:
Intro and outro music for the Voices of MED13L Foundation podcast was composed and performed by Sophie Seaver, sibling of an individual with MED13L syndrome. We thank Sophie for sharing her talent with our community.
Kathleen Boychuck, Chair of The MED13L Foundation
Co-host
Vanessa Dias, Vice Chair of The MED13L Foundation
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