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 http://rarediseases.info.nih.gov/RareDiseaseDay.aspx.
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 (http://www.cc.nih.gov/ccc/btb/) 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. Come watch "Catch a contagion and cork it" or the perennially popular "Pin a Pathogen on the Doctor" game.
