Rare Disease Day at NIH (RDD@NIH)
On February 28, and March 1, 2013, the National Institutes of Health (NIH) will celebrate the sixth annual Rare Disease Day with a 2-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.
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 and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden, and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health, and to be provided the resources required to overcome common obstacles in their lives.
Rare Disease Day at NIH (RDD@NIH) will be held in the Natcher Auditorium (Building 45) from 8:30 a.m. to 5:00 p.m. on Thursday, February 28, and from 8:30 a.m. to 4:00 p.m. on Friday, March 1. Attendance is free and open to the public. The event will also be available via live and archived videocast on February 28 and March 1.
For more information about Rare Disease Day, please visit the event’s website. For more information about rare diseases, please visit the NIH Office of Rare Diseases Research and Genetic and Rare Diseases Information Center (GARD) websites.