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Third National Rare Disease Week

Manila, Philippines – Rare diseases are a serious public health concern and a priority in the Philippine health system and research programs. To increase public awareness on rare disorders in the country, the Third National Rare Disease Week will be observed on February 21-28, 2012, led by the Philippine Society of Orphan Disorders, pursuant to the Rare Disease Act of the Philippines.

Getting a correct diagnosis can be a major challenge if one has a rare disease. It can be a long, frustrating experience.

There are about 7,000 known rare diseases mostly caused by genetic defects and environmental exposure during pregnancy or later in life. While signs may be detected at birth or during childhood, more than 50 percent of rare diseases appear during adulthood and are often life-threatening or chronically debilitating. Usually, there is no effective treatment but screening for early diagnosis, followed by suitable care, can improve quality of life and life expectancy.

In the last two decades medical professionals from the Institute of Human Genetics of the National Institutes of Health at the University of the Philippines have been dedicating themselves to undertaking clinical trials to contribute to the body of knowledge that will lead to improving the health of Filipino patients with rare diseases.

The dedication of these medical researchers and professionals, as well as drug companies have resulted in breakthrough therapies, and hopefully soon, there will be cures for a growing number of rare disorders. CONGRATULATIONS!

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