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Beyond the Diagnosis

Rare disease art exhibit coming to Transit Gallery

"Clara," by B. Twilley. Image: Rare Disease United Foundation

Jennifer Gillooly Cahoon, an artist and the chair of the art department at East Providence High School in Rhode Island, recalled a chance meeting with Patricia Weltin, co-founder and CEO of the Rare Disease United Fund, when Weltin came to pick up her daughter up from school one day.

“She told me her story about being the mom of a girl with a rare disease, about her foundation and about a new idea she had: to create an art exhibition featuring the faces of a large number of children fighting a variety of rare diseases,” recalled Cahoon.

Moved by Weltin’s story, Cahoon began work on a portrait of a young patient with a rare disease, which will be included in “Beyond the Diagnosis,” a special traveling exhibit to be unveiled at the HMS Gordon Hall Transit Gallery on Nov.4.

“Beyond the Diagnosis” was first displayed in February 2015 at Brown University’s Alpert Medical School, drawing widespread media coverage.

“The concept of hanging painted portraits in an atypical environment, to get them in front of the eyes of medical professionals and those in training is, in my mind, brilliant,” said Cahoon.

“The world needs to see rare diseases. People need to see our humanity. We are not our disease and we are deserving of treatments.” - Patricia Weltin.

Because of the positive response among Brown’s medical students and faculty, “Beyond the Diagnosis” will be featured in its second installment in the HMS Transit Gallery from Nov. 4 through Dec. 15 .

“Visual art brings about an understanding that mere words do not reach,” said Sandi Carter Brown, project director of the exhibit and a contributing artist.

“My hope is that when people view “Beyond the Diagnosis,” they experience an eternal awareness. I also hope for better diagnosis time, education, understanding, treatment and cures,” Brown adds.

HMS will mark the opening of “Beyond the Diagnosis” with an artist talk on Nov. 12 from 4 to 5 p.m. in Goldenson 122. The opening will feature introductions by Jeffrey S. Flier, dean of HMS.

Weltin and Cahoon will join executive director of the Undiagnosed Diseases Network Coordinating Center at HMS, Rachel Ramoni, along with Matt Might, visiting associate professor in biomedical informatics, who will be speaking at the Nov. 12 event.

The event, sponsored by the HMS Office of Human Resources, will host a concluding reception in the Transit Gallery.

“The world needs to see rare diseases. People need to see our humanity. We are not our disease and we are deserving of treatments,” said Weltin.

For more information on the exhibit, click here