[beagle3]

Getting a rare disease means you have to become the expert of your own disease in other places as well.

For the “average” rare disease, the vast majority of the people in the medical system have either (a) not heard of it at all (b) had one paragraph (at most, one lecture) about it while studying. (c) have likely not met a patient with said disease, or maybe a couple over a decade or two

The doctors you see have no time to study and be up to date about multiple rare diseases.

Whereas you have the time and the motivation (and hopefully the ability) to understand all the updates, consider anecdotes, etc.