Every rare disease awareness day on social media makes me feel guilty for not being a better advocate for my condition but I'm too tired from living with it to also campaign about it.
More people experience this than they realize.
The expectation that those suffering from rare conditions should also lead the fight against them adds an additional burden to people already struggling with basic survival.
“Where Are You with Rare and orphan conditions?”
Peri can explain why this happens, help you decide if this is the right situation for you, and point toward the right journey or coach.
If this sounds familiar, the Library can help you find the bigger picture.