Harvard Medical School Unveils Rare Disease Art Exhibit

Photo provided to Boston Magazine by the Rare Diseases United Foundation.

Tonight, Harvard Medical School (HMS) will open its Gordon Hall Transit Gallery to a special exhibit titled “Beyond the Diagnosis,” a traveling project spotlighting the faces of rare disease.

The exhibit, created by the Rare Disease United Foundation (RDUF), aims to humanize 36 different diseases not often seen in either the artistic or medical world through art. The paintings on display were created by volunteer portrait artists who attempted to capture patients’ complex emotions, identities, and hardships on the canvas.

The project, which was launched in February of this year, features paintings of children and adults fighting afflictions such as Rett Syndrome, a brain disorder that slows hand, foot, and head growth, and Ectodermal Dysplasia, a group of genetic disorders that prevents the proper functions of teeth, hair, nails, and sweat glands, among many others.

“Beyond the Diagnosis” began its journey at Brown University, where more than 100,000 people visited the exhibit in just under a month. The HMS stop will only be its second of many; it will next move to the National Institutes of Health.

By occupying popular spaces, like universities, RDUF hopes to flesh out these individuals’ stories in the public consciousness, not just the medical community, with an end goal of helping to erase the stigmatization and marginalization of people living with these disorders.

“The world needs to see rare diseases,” Patricia Weltin, the founder and CEO of RDUF, says in a statement. “People need to see our humanity. We are not our disease and we are deserving of treatments.”

The exhibit is open to the public and will be held at Gordon Hall Transit Gallery, Goldenson Hall, 220 Longwood Ave., Boston until December 15. Visit hms.haravrd.edu for more information.