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HOUSE OF REPRESENTATIVE pceq,

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VENTENTH (7% CONGRESS a ws

First Regular Session
REGISTRATION UNIT
BILLS AND INDEX SERVICE

Boxe
House Bill No,_ 2716

Introduced by: REP, ELISA T. KHO.

EXPLANATORY NOTE

Our Constitution expressly provides under Article 2, Section 15 that:

“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
Health, as the primary health research arm of the government, to conduct a

research that focuses on pediatric rare diseases to aid in their diagnos

prevention and cure.

Elyngungur the
ELISA T. KHO, M.D., FPCCP



Republic of the Philippines

HOUSE OF REPRESENTATIVES
Quezon City

SEVENTEENTH (17") CONGRESS
First Regular Session

2716

House Bill No,

Introduced by: REP. ELISA T, KHO

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:

SECTION 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

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 ITealth (DOH), in consultation
with UP-NIH, shall identify which Pediatric Rare Diseases andConditions 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,

SECTION 5. Repealing Clause- Any law, presidential decree or
issuance, executive order, letter of instruction, administrative order, rule
orregulation 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.