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Staff and public are invited to attend Rare Disease Day at NIH, a day-long celebration recognizing rare diseases research activities supported by several government agencies and advocacy organizations. 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.
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.
Co-sponsored by the NIH Office of Rare Diseases Research and the Clinical Center. This is a free event that is scheduled from 8:30 am to 5:30 pm, with a lunch break and poster session from 11:30 am to 1:30 pm. Pre-registration is encouraged.
Sign language interpreters will be provided.
Runtime:
03:43:44
NLM Title:
Rare disease day at NIH [electronic resource] / ORDR & Clinical Center.
Author:
National Institutes of Health (U.S.). Office of Rare Diseases Research. National Institutes of Health (U.S.). Clinical Center.
Publisher:
[Bethesda, Md. : National Institutes of Health, 2011]
Abstract:
(CIT): Staff and public are invited to attend Rare Disease Day at NIH, a day-long celebration recognizing rare diseases research activities supported by several government agencies and advocacy organizations. 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. 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. Co-sponsored by the NIH Office of Rare Diseases Research and the Clinical Center. This is a free event that is scheduled from 8:30 am to 5:30 pm, with a lunch break and poster session from 11:30 am to 1:30 pm. Pre-registration is encouraged. Sign language interpreters will be provided.
