Periagoge
Scenario

When parents process a rare disease diagnosis differently

My daughter was diagnosed with a rare metabolic disorder and my husband and I are handling the uncertainty completely differently — he researches obsessively while I can barely look at the medical papers, and we're not talking about how terrified we both are that there might not be any real treatment options.

More people experience this than they realize.

What we've seen

Two people are drowning separately in the same overwhelming reality, unable to bridge their different coping mechanisms.

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.