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
Episodes
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 M...
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...
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 treatm...
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