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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
Latest Episodes
Growing Up With MED13L: Life at 18
In this episode of Growing Up With MED13L, we go back to the very beginning with Belen Fernandez Crespo, mother to 18-year-old Nacho, joining us from Spain.Belen knew something was different when Nacho was still a baby, long before anyon...
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MED13L Research Update: Where We Are and Where We’re Headed.
In this special research update episode of Voices of MED13L, Rowan Dias opens with reflections from the World Orphan Drug Congress and the MED13L Foundation’s first year participating in the Million Dollar Bike Ride before introducing ...
May is MED13L Awareness Month
An Honest Look at MED13L, Our Community, and the Foundation Behind ItMED13L Awareness Month Special | May 2026This Awareness Month, host Vanessa Dias gets honest — about the spectrum of MED13L, the families the found...
Kathleen Boychuck, Chair of The MED13L Foundation
Co-host
Vanessa Dias, Vice Chair of The MED13L Foundation
Co-host
Rowan Dias
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