Rare Disease Day 2014

Rare Disease Day at NIH On February 28, 2014, the National Institutes of Health (NIH) will celebrate the seventh annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance. Attendance is free and open to the public. In addition to the various scheduled talks (see agenda on website), there will be Clinical Center Tours and posters and exhibits from many groups relevant to the rare diseases research community displayed. In association with the Global Genes Project, we again encourage all attendees to wear their favorite pair of jeans. About Rare Disease Day Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients' lives. There are about 7000 rare diseases identified in the United States. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce an...
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