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Opinion: NIH balked at a child’s portrait in a rare disease exhibit because it may ‘evoke negative emotions.’ I’m appalled

The organizers of "Beyond the Diagnosis" did the right thing by withdrawing their show from the NIH. Its request to remove one portrait of a child with a rare disease…

My friend and fellow rare-disease warrior, Patty Weltin, recently reached out to me on social media.

“I’m so upset,” she said in a private message. “Beyond the Diagnosis isn’t going to the NIH.”

“” is an exhibit of portraits of people — mostly children — with rare diseases that have been created by a small army of volunteer artists. More than that, it’s a presentation of the colorful souls within those seemingly imperfect bodies and a bright, uplifting,

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