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Paintings seek to inspire research on rare diseases

Beyond the Diagnosis features more than 100 paintings of children with a rare disease. (WJAR)
Beyond the Diagnosis features more than 100 paintings of children with a rare disease. (WJAR)
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An organization brings together art and science to help inspire research on rare diseases.

It's called Beyond the Diagnosis and it features more than 100 paintings of children with a rare disease.

"They're just somebody's child. Just like everybody else's child. They just have a rare disease," said Patricia Weltin, who founded Beyond the Diagnosis.

Paintings feature the faces of children from around the globe with diseases many of us couldn't pronounce.

"It went from 17 portraits to over 100 portraits in four years," said Weltin.

Artists volunteer their time to paint each precious face. Weltin beginning this movement after both daughters were diagnosed with Ehlers Danlos syndrome.

"Ehlers Danlos syndrome is a connective tissue disorder," explained Hana Weltin, Patricia’s daughter. "I don't have any collagen which means that I don't have anything holding me together. So my joints dislocate."

"I'm in pain a lot."

For Hana's older sister it took 18 years to get the diagnosis. Their mom trying to use art to raise awareness.

"I just knew that we had to connect with the medical community in a way that they would see us, and we would be humanized," said Weltin.

"There needs to be more research. There needs to be more funding for these diseases. These kids deserve treatment."

The paintings are shown in exhibits across the country--at hospitals, research institutions, medical schools. Shining a light on kids who cling to hope.

"It's amazing. I'm really impressed and proud of my mom for doing it," beamed Hana, of her mother.

And mom is proud of her daughter who has been through so much.

"My neck was unstable and so it was causing my skull to cause a kink in my brain stem," said Hana.

And that required major surgery. And while Hana has missed a lot of school--she says she recently aced her SAT.

Her future plans include making a difference.

"I want to cure Ehlers Danlos syndrome so I'm going to go into biology," said Hana.

There are 7,000 rare diseases. Only a fraction of them have effective treatments.

Frame It in Cranston has about a dozen of the paintings of display. They'll be there until the middle of October if you want to check them out.

For more on Beyond the Diagnosis, go to:

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