What Is the Undiagnosed Disease Program?

The Undiagnosed Disease Program was created to meet the needs of people with rare disorders that remained undiagnosed. Learn more in this video with HealthMaker Cynthia Tifft, MD, PhD, director of NIH’s Pediatric Undiagnosed Diseases Program.

Transcript

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It's a fascinating program that was started in about May of 2008, realizing that there was really

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an unmet need of not only people that had very rare disorders, but people who had not

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been able to achieve a diagnosis even after years and years of looking. The Office of Rare Disorders was getting phone calls

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from people with ultra rare disorders. But about 6% of the 6,000 calls they got per year were people who had not been able to even get to first base,

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so to speak. They had not been able to even arrive at a diagnosis, despite years and years, in most cases, of looking for a diagnosis.