u/TennisTraining9270

how do you all constantly explain to doctors your diagnosis who have never heard of it? we just spent 20 minutes of an appointment for a doctor to google (in front of us!) our daughters rare condition. do you have a one-pager that you bring to appointments - if so, is anyone willing to share a template? I’ve tried sending messages to mychart patient portal prior to appointments but I don’t think the doctor looks at them.

any advice here would be greatly appreciated!