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.

Support the show

Resources

MED13L Awareness Campaign: https://secure.qgiv.com/event/med13lfoundationp2p/

Profile Frame for Socials: https://twb.nz/med13lfoundation

Be Counted in the 2025 Census: https://med13l.org/patient-registry-genetic-report-stubmission/

Million Dollar Bike Ride: https://charity.pledgeit.org/MillionDollarBikeRide/teams/@med13l

Community Checklist: Google Drive Link

CRID: thecrid.org

Citizen Health: citizen.health/partners/med13l-foundation

Simons Searchlight: https://research.simonssearchlight.org/account/create

Rare-X: rare-x.org/med13l

Website: med13l.org

Facebook: facebook.com/med13lfoundation

Instagram: instagram.com/med...