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Republic of the Philippines | ae
HOUSE OF REPRESENTATIVES \
Quezon City
SIXTEENTH CONGRESS.

First Regular Sessiot
House Bil No. 8258

Introduced by Hon. Sol Aragones

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 any kind of 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
Heath, 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.

ong
L ARAGONES
Representative, 3 District of Laguna



oN

Republic of the Philippines
HOUSE OF REPRESENTATIVES
Quezon City

SIXTEENTH CONGRESS
First Regular Session

3258

House Bill No.

Introduced by Hon. Sol Aragones

———— SSS

AN ACT
MANDATING THE NATIONAL INSTITUTES OF HEALTH TO.
CONDUCT RESEARCH ON RARE PEDIATRIC DISEASES AND
CONDITIONS

Be it enacted by the Senate and House of Representatives of the Philippines. in
Congress assembled:

SI

‘TION 1. Short Title — This Act shall be known as “Rare Pediatric

Diseases and Conditions Research Act.”

SECTION 2. Research — Within two (2) years from the effectivity of this
Act, the University of the Philippines National Institutes of Health (UP-NIH)
shall:

‘A. conduct a research that focuses primarily on pediatric rare diseases or
conditions (including any such diseases or conditions that are genetic
disorders (such as spinal muscular atrophy and Duchenne muscular
dystrophy) or are related to birth defects (such as Down syndrome and

fragile X)); and


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B. conduct or coordinate one or more multisite clinical trials of
therapies for, or approaches to, the prevention, diagnosis, or treatment

of one or more pediatric rare diseases or conditions.

SECTION 3. Registry. — The Department of Health (DOH), in
consultation with UP-NIH, shall identify which Pediatric Rare Diseases and
Conditions shall be covered by this Act. DOH shall establish a registry of all

Pediatric Rare Diseases and Condition, which shall be accessible to UP-NIH.

SECTION 4. Report. — Within one (1) year from completion of the
research, as provided by this Act, UP-NIH shall submit its findings to the DOH

and the appropriate committees in the Senate and the House of Representatives.

Ss

issuance, executive order, letter of instruction, administrative order, rule or

‘TION 5. Repealing Clause. — Any law, presidential decree or
regulation contrary to or inconsistent with this Act is hereby repealed, modified,
or amended accordingly.

SECTION 6. Effectivity Clause. — This Act shall take effect fifteen (15)
days after its publication in at least two (2) newspapers of general circulation.

Adopted,