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Norman event to put focus on rare diseases

Wednesday, people can learn more about diseases that affect fewer than 200,000 people at an event in Norman recognizing Rare Disease Day.
By JACLYN COSGROVE jcosgrove@opubco.com Published: February 29, 2012
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— Mark Dvorak remembers learning the definition of the word “rare” in grade school.

But it wasn't until his adult life when he truly understood what the word meant.

In 1997, Dvorak was diagnosed with hereditary spastic paraplegia, an inherited disorder characterized by progressive weakness and stiffness of the legs.

The disorder that Dvorak, 50, suffers from is one of several thousand rare diseases affecting about 30 million Americans.

In hopes of raising awareness about rare diseases, Dvorak is hosting a Rare Disease Day event Wednesday in Norman.

“About three years ago, I realized there are 7,000 or so rare diseases,” Dvorak said. “My jaw just dropped, and I realized I have just got one of the 7,000.”

Rare Disease Day is an international event that brings awareness to diseases that affect fewer than 200,000 people.

Rare disease patients face problems such as lack of access to correct diagnosis, lack of scientific knowledge of the disease and lack of appropriate quality health care, event organizers said.

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