Media Advisory

Thursday, February 17, 2011

Rare Disease Day at NIH presents latest research from various agencies and advocacy groups


The National Institutes of Health will celebrate the Fourth Annual Rare Disease Day Feb. 28 with a day-long celebration co-sponsored by the NIH Office of Rare Diseases Research and the NIH Clinical Center. The event will recognize rare diseases research activities supported by several government agencies and advocacy organizations. Attendance is free and open to the public and the media, and pre-registration is encouraged. In association with the Global Genes Project (a grassroots effort to use jeans to raise awareness for rare genetic disorders), organizers urge all attendees to wear their favorite pair of jeans. Those interested can register and learn more at


Rare Disease Day was established to raise public awareness 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 7,000 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.


Organizers have put together an agenda of scheduled talks—including two from NIH Bench-to-Bedside Award ( investigators—and posters and exhibits from many groups relevant to the rare diseases research community. NIH Director Dr. Francis S. Collins will speak to attendees at 1:30 pm.


Rare Disease Day at NIH will be held in the NIH Clinical Center Lipsett Amphitheater on Feb. 28, 2011, from 8:30 am to 5:15 pm with a lunch break and poster session from 11:30 am to 1:30 pm.

The NIH Clinical Center (CC) is the clinical research hospital for the National Institutes of Health. Through clinical research, physician-investigators translate laboratory discoveries into better treatments, therapies and interventions to improve the nation's health. For more information, visit

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit

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