EPISODE · Dec 15, 2025 · 11 MIN
Citizen Health: 13 Minutes With MED13L
from The Voices of MED13L
Mini Episode: 13 Minutes with MED13LHost: Katie Boychuck, Chair of the MED13L FoundationIn 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.Support the showResourcesMED13L Awareness Campaign: https://secure.qgiv.com/event/med13lfoundationp2p/Profile Frame for Socials: https://twb.nz/med13lfoundationBe Counted in the 2025 Census: https://med13l.org/patient-registry-genetic-report-stubmission/Million Dollar Bike Ride: https://charity.pledgeit.org/MillionDollarBikeRide/teams/@med13lCommunity Checklist: Google Drive LinkCRID: thecrid.orgCitizen Health: citizen.health/partners/med13l-foundationSimons Searchlight: https://research.simonssearchlight.org/account/createRare-X: rare-x.org/med13lWebsite: med13l.orgFacebook: facebook.com/med13lfoundationInstagram: instagram.com/med...
What this episode covers
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, appointment...
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Citizen Health: 13 Minutes With MED13L
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