Groundbreaking art exhibit puts spotlight on rare diseases

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A unique art exhibit that focuses on children living with a rare disease is now on display at Nemours/Alfred I. duPont Hospital for Children in Wilmington.

The traveling art exhibit of portraits called Beyond the Diagnosis was hatched three years ago by Patricia Weltin, founder of the Rhode Island-based Rare Disease United Foundation.

“There’s 7,000 different rare diseases and they affect, in the United States, about 15 million kids,” said Weltin, whose own two daughters suffer from a rare disease that affects their connective tissue. “We’re kind of invisible to a lot of the medical community, the research institutes, mostly the government.”

Artists from around the world donated their time and talents to paint a portrait for the exhibit. When Weltin first started the exhibit, she had 17 portraits. Three years later, she’s amassed more than 100 and she’s reaching a larger audience than she could have ever imagined. Weltin was just asked to bring the exhibit to Botswana.

“I’m an extremely practical human being, but for me, this seems like magic,” Weltin said.

A unique art exhibit that focuses on children living with a rare disease is now on display at Nemours/Alfred I. duPont Hospital for Children in Wilmington. (Shirley Min/WHYY)
A unique art exhibit that focuses on children living with a rare disease is now on display at Nemours/Alfred I. duPont Hospital for Children in Wilmington. (Shirley Min/WHYY)

Because 95 percent of all rare diseases lack treatment of any kind, Weltin hopes Beyond the Diagnosis raises awareness, increases funding for research, and most importantly, puts a face to some of these little-studied diseases.

“We need the FDA to see these kids. You know, this is who you work for. This is who everybody is working for. We’re all working. In the end, it’s for these kids and to find a treatment for these kids. I mean, I would prefer a cure, but I’ll settle for a treatment,” she said.

Joanna Costa’s portrait is the newest addition to the exhibit. The South Jersey native was born with Arthrogryposis Multiplex Congenita or AMC, which affects the muscles and joints.

In Costa’s case, the rare disease keeps her from raising her arms above her shoulders and she can only use two fingers on each hand, but she doesn’t let her condition hamper her life.

Costa, 19, studies at Temple University and loves playing the piano.

“My favorite part of this exhibit idea is that it doesn’t emphasize the disability. It shows the person’s face and I really like that. We’re all people, that’s my favorite part of it,” Costa said.

Biomedical engineer Dr. Tariq Rahman works at A.I. and has worked with Joanna for 15 years. When he heard the exhibit was coming to his hospital, he knew he wanted to paint Costa’s portrait.

“I’ve seen her grow from a 5-year-old who came into our lab eating Skittles, to now she’s a junior at Temple. So I’m seeing that progression,” Rahman said. “[The exhibit will] bring visibility to rare diseases. It helps the kids enormously.”

Weltin, one day, hopes to have a portrait for all 7,000 rare diseases.

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