La Union lawmaker seeks support for Rare Disease patients

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AGOO, La Union: Rep. Eufranio Eriguel (La Union, 2nd District) said that the Congress has approved the Rare Disease Bill which provides medical and financial support to patients with uncommon diseases in the country. Eriguel, who is the chairman of the Committee on Health in Congress, said the measure also seeks to get some funding support from the Department of Health (DOH). He added that the bill also seeks to provide support, like the specialized medical personnel, and strengthen the DOH research division, which maybe tasked to find the cure and prevention of rare diseases. Authored by Las Piñas Rep. Mark Villar, the rare diseases include the Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methymalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome and Prader-Willi Syndrome. According to the Philippine Society for Orphan Disorders’ (PSOD), there are 6,000 to 8,000 rare diseases in the country affecting 75 percent of children population in the country. Thirty percent of rare disease patients die before they reach five years old, Villar added. The Bill defines rare disease as any health condition resulting from genetic defects that rarely affect the general population, which are often chronic, progressive, degenerative, and life-threatening.

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