We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United Foundation.

Its latest stop was slated for the National Institutes of Health (NIH) headquarters near the nation’s capital in Maryland. The NIH seemed like a perfect place to celebrate those with rare diseases, and yet a small controversy erupted.

The director of the NIH had to apologize after its hospital curator objected to displaying one portrait; which lead the organizers to cancel the show. 

According to the NIH Clinical Center:

“The hospital art curator expressed to the exhibit organizer that one of the portraits in the collection of rare disease portraits may evoke negative emotions in patients.”

However, Annette Maughan, the chief executive officer of the KBG Foundation wrote in a STAT opinion piece:

  “I’ve seen the portrait the NIH wanted removed, and all I saw was a happy, vibrant young man.”

And furthermore, STAT reports that the portrait in question had already been shown at the Food and Drug Administration and the Broad Institute in Cambridge, Massachusetts – and no complaints were lodged.

“I had a really visceral reaction,” said Patricia Weltin, the organizer of the Beyond the Diagnosis exhibit. “I spent the weekend — in my mind there was no other decision at all. It’s either all of us or none of us.”

But after speaking to its director, she accepted the NIH’s apology, and despite initially pulling the exhibit entirely as a show of solidarity, has agreed to bring the exhibit to the NIH during its Rare Disease Day event on February 28th, 2019.