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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
Citizen Health: 13 Minutes With MED13L
Mini Episode: 13 Minutes with MED13L
Host: Katie Boychuck, Chair of the MED13L Foundation
In this first-ever 13 Minutes with MED13L mini-episode, Foundation Chair Katie Boychuck walks families step-by-step through Citizen Health—a secure, easy-to-use platform the Foundation is recommending to help parents centralize their child’s medical information.
Katie shares openly as both a leader and a MED13L parent, explaining why organizing records in one place can make care coordination, appointments, and day-to-day decision-making far more manageable. She also highlights the importance of the MED13L Census, touches on Rare-X enrollment progress, and shows exactly how simple it is to create a Citizen Health account using your child’s CRID.
If you’ve been meaning to sign up but haven’t found the time, this episode offers a clear, supportive walkthrough you can follow in real life—right from your phone, your car, or wherever you are in the middle of your busy day.
Together, we are not so rare.
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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