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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.
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 is celebrated around the world to raise awareness among decision-makers as well as the general public regarding rare diseases and their impact on patients’ lives. The NIH celebrates Rare Disease Day to:
- Demonstrate and reiterate the NIH commitment to rare diseases research to help patients
- Highlight rare diseases research, and the development of diagnostics and treatments, being funded and conducted across NIH
- Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates and policy makers
- Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts
- Put a face on rare diseases by sharing stories of patients, their families and their communities
The first Rare Disease Day sponsored by EURORDIS was held in Europe on February 29, 2008. February 29th was chosen since it is a rare day and it is symbolic of rare diseases. 2009 was the first time that Rare Disease Day was observed in the U.S. In addition to 17 European countries participating in Rare Disease Day 2009, the United States was joined by Argentina, Australia, Canada, China, Colombia, and Taiwan in celebrating the first global Rare Disease Day.
Zebra Stripes Awareness Ribbon Angel Art Painting for Rare DiseaseThe above information was from NIH Rare Diseases website. Learn more at http://rarediseases.info.nih.gov/news-and-events/pages/28/rare-disease-day
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Rare Disease Zebra Stripes Awareness Ribbon Angel Art Painting