I have a condition so rare that my doctor googles it during our appointments and I've started bringing printed research because I feel like I'm teaching my own medical care.
More people experience this than they realize.
The absence of widespread clinical knowledge forces patients into the uncomfortable role of educating their own caregivers while still needing care themselves.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.