The National Institutes of Health has hosted a Rare Disease Day event every year since 2010.
Here are five things to know about rare diseases and the NIH event.
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1. Rare Disease Day at the NIH is scheduled for Feb. 27, 2017.
2. The event will be held from 8:30 a.m. to 4 p.m. at the NIH Clinical Center in Bethesda, Md.
3. The slogan for the event is “Patients & Researchers — Partners for Life.” The slogan is in keeping with NIH’s National Center for Advancing Translational Sciences’ philosophy that researchers must work closely with patients, families, caregivers and advocacy groups to advance rare diseases research.
4. Highlighted speakers include Rep. Leonard Lance, R-N.J., co-chair of the Congressional Rare Disease Caucus; Christopher P. Austin, MD, NCATS director; Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases; James K. Gilman, MD, CEO of the NIH Clinical Center; John I. Gallin, MD, associate director for clinical research and chief scientific officer at NIH Clinical Center.
5. There are an estimated 6,000 to 7,000 rare diseases in the world. While individual rare diseases affect less than 200,000 people each in the United States, these conditions in total affect an estimated 25 million Americans.
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