Periagoge
Scenario

When your child receives an ultra-rare disease diagnosis

My daughter was just diagnosed with a condition so rare there are only 200 known cases worldwide and I keep oscillating between feeling like we're part of some exclusive terrible club and completely alone in the universe.

More people experience this than they realize.

What we've seen

The simultaneous experience of being both uniquely isolated and connected to an impossibly small community creates a disorienting sense of belonging nowhere and everywhere at once.

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.