Grace Peshkur has a rare skin disease, which covers 90 percent of her body in burns.

The 6-year-old girl has epidermolysis bullosa (EB), a rare and often fatal genetic disease that weakens the skin and causes sores, scars, deformities and internal blistering to form. The disease affects about 12,500 people in the U.S., according to the National EB Registry. However, some experts believe the disease affects almost 100,000 people in various forms.

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Peshkur this week attended the first National Epidermolusis Bullosa Awareness Week, which was designed to raise money and understanding of the rare disease. The event was developed by a bill introduced by U.S. Congressman Tim Bishop in hopes to raise money for research at Stanford University.