LibraryScenariosWhen rare disease fundraising feels morally complicated
Scenario

When rare disease fundraising feels morally complicated

I've raised over fifty thousand dollars for research into my daughter's condition but sometimes I wonder if I'm just funding false hope for myself and other desperate parents.

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More people experience this than they realize.

What we've seen

The urgent need to act conflicts with uncertainty about whether the actions taken serve genuine progress or merely the psychological need to do something.

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.