Rare diseases Research Network
Rare Disease Day at NIH
On February 28, 2014, the National Institutes of Health (NIH) celebrated 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. Rare Disease Day at NIH was held in the Masur Auditorium (Building 10) from 8:30 a.m. to 5:00 p.m. on Friday. Attendance was free and open to the public.
In addition to the various scheduled talks (see agenda), there were 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 encouraged 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. The focus of Rare Disease Day 2010 was 'Patients and Researchers, Partners for Life!' and is aligned with ORDR's philosophy that researchers need to work closely with patients and patient advocacy groups to maximize chances for success. This philosophy has been put into practice in our very successful Rare Diseases Clinical Research Network.
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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.By highlighting these issues, the NIH Office of Rare Diseases Research hopes to:
- Raise awareness of rare diseases
- Strengthen the voice of patients and patient advocacy groups
- Give hope and information to patients
- Bring stakeholders closer together
- Coordinate policy actions within the United States and with other countries
- Inspire continued growth of the awareness of rare diseases
- Emphasize rare disease research and the search for new therapeutics
- Get equality in access to care and treatment
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