LibraryScenariosWhen rare conditions create invisible parenting challenges
Scenario

When rare conditions create invisible parenting challenges

My son's rare syndrome affects his behavior in ways that look like bad parenting to strangers and I've stopped going places because I can't handle another judgmental look or unsolicited advice.

Dipa
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More people experience this than they realize.

What we've seen

The external manifestation of internal medical realities subjects families to social judgment based on incomplete and inaccurate assumptions.

Ideas that help explain it
Worth thinking about

“Where Are You with Rare and orphan conditions?”

If this sounds familiar, the Library can help you find the bigger picture.