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GBMC to unveil $1.2M center to treat rare disorder

The Greater Baltimore Medical Center will soon unveil a $1.2 million research and treatment center focused on Ehlers-Danlos Syndrome (EDS), a rare disorder affecting the tissues that connect skin, bones and ligaments.

In addition to providing clinical care for patients with EDS, the center will serve as a research and education hub where physicians and other providers can collaborate on studies and share basic information about the disorder amongst themselves and with others.

The project is being funded by the Ehlers-Danlos National Foundation (EDNF), which will provide $250,000 a year for the next five years, according to Executive Director Shane Robinson.

The EDNF Center for Clinical Care and Research is not a new physical facility; it will occupy space in GBMC’s main hospital in Towson and is housed within the Harvey Institute of Human Genetics.

“It’s a place where we can utilize the best available knowledge to implement the best treatment that is currently known,” Robinson said.

Hospital and EDNF officials are holding an official launch ceremony on Aug. 16.

The funding from EDNF will go toward salaries for physicians, nurse practitioners and administrative staff, as well as equipment, educational materials and overhead, Robinson said.

“A big thing we struggle with is that very few people know much about [EDS],” Robinson said. “Most medical practitioners have heard of it, but their knowledge is usually pretty limited. That’s made worse by the fact that it’s considered rare, so physicians often think they don’t have to worry about learning about it.”

Robinson said his foundation chose to locate the center at GBMC because the hospital is “one of the few institutions that is really known for effectively treating people with EDS.”

He also cited the “well-known expertise” of Dr. Clair Francomano, who will be the new center’s director. Francomano is currently director of adult genetics at GBMC.

GBMC was selected out of more than a dozen contenders, Robinson said, adding that the foundation hopes to open more such centers around the country.

“But the goal is to one day have patients not have to go to a specific cente, but be able to go anywhere and have there be physicians with knowledge of EDS,” Robinson said. “That doesn’t exist now. There are large swaths of the country where people can’t find physicians to treat them.”