Harvard Medical School
By SAVANNAH YOUNG October 29, 2015
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 Foundation, 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.
Harvard Medical School Unveils Rare Disease Art Exhibit
‘Beyond the Diagnosis’ is on display from November 4 to December 15.
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.
NOVEMBER 30, 2015
A mother who spent years struggling to diagnose her daughter’s illness has found a new tool to draw attention to rare diseases: oil on canvas.
Patricia Weltin, a single mom raising two daughters with rare diseases, described years of frustration — and even 10 unnecessary surgeries — before figuring out that her eldest daughter has Ehlers-Danlos syndrome, a rare disorder that was making her vomit in her sleep.
Between 25 and 30 million people in the US have rare diseases, defined as affecting fewer than 200,000 people nationally, according to the National Institutes of Health. Yet, Weltin said, many suffer in isolation.
“This community is used to feeling invisible,” she said.