Periagoge
Scenario

Why rare disease patients need ordinary friendships too

The rare disease community online is incredibly supportive but sometimes I just want to talk to someone who doesn't know what a chromosome deletion is and won't start sharing their own medical horror stories.

More people experience this than they realize.

What we've seen

The intensity of shared struggle can create community bonds that, while precious, cannot fulfill the human need for relationships uncomplicated by crisis.

Your guide for this
Dipa
Dipa works with people navigating exactly this kind of situation.
Ideas that help explain it
Worth thinking about

“Where Are You with Rare and orphan conditions?”

Peri

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.