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 Counted in the 2025 MED13L Census
Visit med13l.org and click Register to be counted.
Every registration helps researchers and clinicians see the true scope of MED13L and adds your family to the global map.
3️⃣ Stay Informed — Sign Up for the Newsletter
Join the mailing list for updates, research news, and family stories.
Catch up on past issues in our Newsletter Archive.
4️⃣ Learn the Basics — Start with the FAQ Page
Get trusted answers to the most common questions: New to MED13L? Visit our FAQ.
5️⃣ Join the MED13L Registries — Turn Stories Into Science
– Apply for your Clinical Research ID (CRID): thecrid.org
– Enroll with RARE-X (caregiver surveys): rare-x.org/med13l
– Upload records securely via Citizen: citizen.health/partners/med13l-foundation
6️⃣ Connect With the Community
Join our social spaces for connection and support:
– Register with the Foundation
– Facebook Family Group
– Instagram @med13lfoundation
– Slack Group Signup
🌐 Visit: www.MED13L.org
📬 Contact: info@med13l.org
💙 Together, we’re turning stories into science — and science into treatments.
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.
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