Tamika Morgan

Tamika Morgan was diagnosed with an extremely rare eye disease that threatened her vision in November of 2010. (Barbara Haddock Taylor, Baltimore Sun / May 4, 2012)

The group collects information on these rarities, as well which researchers are studying them, and officials share the information with those just diagnosed or those investigating what might be wrong. Often, patients have to travel to academic centers hundreds of miles away for an expert.

"A big problem is that after they finally get a diagnosis, a lot of rare diseases don't have treatments and no one is doing research," Dunkle said. "Fewer than 300 of the diseases considered rare have treatments. A lot of people are treated 'off label,' or with drugs not approved by the FDA for their disease. They can encounter insurance problems."

But Dunkle said there has been an uptick in research in recent years, and a third of new drugs approved by the U.S. Food and Drug Administration last year were aimed at rare diseases. Many researchers are now focusing on the basic science behind these disorders, possibly leading to new treatments.

More stories like Morgan's are Dunkle's aim.

"An answer in a week is wonderful," Dunkle said of Morgan's diagnosis. "And so is having a treatment, even if it's not ideal."

Morgan missed three months at her federal government job but, with relatives' aid, continued to make top grades and expects to earn her master's degree from the University of Baltimore this month on time. She plans on going back for a law degree.

"The hardest part was losing my independence," said Morgan, whose mother, Michelle Morgan, had to leave her job to take her daughter to weekly doctors' appointments, administer sometimes hourly drugs and help her with daily activities, including dressing and cooking.

Morgan's mother said the experience has her mindful of always getting prompt medical care. But mostly, she said, she's thankful for the doctors, who tended to her daughter even on Thanksgiving, and for Tamika's renewed health.

"For a while, it was like having a small child again," she said. "She couldn't even match her socks. Once we left her for a little while and she almost burned down my kitchen. … The doctors in the center call her a miracle and she is."


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