SIXTEENTH CONGRESS OF THE REPUBLIC 
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OF THE PHILIPPINES 
) 
SCU:'lh' 
(~th~r llf H12 ::-t,.\'ltfl.'1r~ 
First Regular Session 
) 
'13 
OCT 21 P 4 :44 
SENATE 
S. No. 1868 
Introduced by Senator Miriam Defensor Santiago 
EXPLANATORY NOTE 
The Constitution, Article 2, Section 15 provides:. 
The State shall protect and promote the right to health of 
the people and instill health consciousness among them. 
Knowledge is the first step towards cure. While we focus our attention on the prevention 
and cure of the more common diseases, we must not be totally blind as to the rare diseases and 
conditions suffered by many of our countrymen. Most vulnerable to these rare afflictions are our 
children. In order to be able to establish ;means to fight these afflictions, we must commission a 
study that will aid us in making sound policies that can produce lasting solutions to our problem. 
This bill mandates the University of the Philippines National Institutes of Health, as the 
primary health research arm of the government, to conduct a research that focuses on pediatric 
rare diseases to aid in their diagnosis, prevention, and cure. 
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~I'n:::lh' 
SIXTEENTH CONGRESS OF THE REPUBLIC 
) 
{~Hl;(, ,If tile j-ff"frtisru 
OF THE PHILIPPINES 
) 
First Regular Session 
) 
'13 
OCT 21 
P 4 :44 
: SE18BB 
S.No. ___ _ 
llECE1VE!.t WI. --r 
Introduced by Senator Miriam Defensor Santiago 
AN ACT 
MANDATING THE UNIVERSITY OF THE PHILIPPINES 
NATIONAL INSTITUTES OF HEALTH TO CONDUCT RESEARCH 
ON PEDIATRIC RARE DISEASES AND CONDITIONS 
Be it enacted by the Senate and the House of Representatives of the Philippines in 
Congress assembled: 
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SECTION 1. Short Title - This Act shall be known as "Pediatric Rare Diseases and 
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Conditions Research Act." 
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SECTION 2. Research - Within ,two (2) years from the effectivity of this Act, the 
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University of the Philippines National Institutes of Health (UP-NIl-I) shall: 
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A. 
conduct a research that focuses primarily on pediatric rare diseases or conditions, 
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including any such diseases or conditions that are genetic disorders (such as spinal muscular 
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atrophy and Duchenne muscular dystrophy) or are related to birth defects (such as Down 
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syndrome and fragile X); and 
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B. 
conduct or coordinate one or more multi site clinical trials of therapies for, or 
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approaches to, the prevention, diagnosis, or treatment of one or more pediatric rare diseases or 
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conditions. 
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SECTION 3. Registry. - The Department of Health (DOH), in consnltation with the UP-
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NIH, shall identify which Pediatric Rare Diseases and Conditions shall be covered by this Act. 
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The DOH shall establish a registry of all Pediatric Rare Diseases and Condition, which shall be 
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accessible to the UP-NIH. 
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SECTION 4. Report. - Within one (l)year from completion of the research, as provided' 
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by this Act, the UP-NIH shall submit its findings to the DOH and the appropriate committees in 
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the Senate and the House of Representatives. 
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SECTION 5. Separability Clause. - If any provision or part thereof is held invalid or 
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unconstitutional, the remainder of the Act or the provision not otherwise affected shall remain 
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valid and subsisting. 
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SECTION 6. Repealing Clause. - Any law, presidential decree or issuance, executive 
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order, letter of instruction, administrative order, rule or regulation contrary to or inconsistent 
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with this Act is hereby repealed, modified, or amended accordingly. 
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SECTION 7. Effectivity Clause. - This Act shall take effect fifteen (15) days after its 
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publication in at least two (2) newspapers of general circulation. 
Adopted, 
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