and in a manner that protects personal privacy, to the ex-
tent required by applicable Federal and State privacy law, 
at a minimum. 
‘‘(i) SUPPLEMENT NOT SUPPLANT.—The activities 
under this section may supplement, but shall not supplant, 
any activities with respect to spina bifida, muscular dys-
trophy, or fragile X syndrome that are ongoing as of the 
date of enactment of this section. 
‘‘(j) REPORTS.— 
‘‘(1) REPORT
ON
INFORMATION
AND
ANAL-
YSES.—Not later than 2 years after the date on 
which any system is established under this section, 
the Secretary shall submit an interim report to the 
Committee on Health, Education, Labor, and Pen-
sions of the Senate and the Committee on Energy 
and Commerce of the House of Representatives re-
garding aggregate information collected pursuant to 
this section and epidemiological analyses, as appro-
priate. Such report shall be posted on the Internet 
website of the Department of Health and Human 
Services and shall be updated biennially. 
‘‘(2) IMPLEMENTATION
REPORT.—Not later 
than 4 years after the date of the enactment of this 
section, the Secretary shall submit a report to the 
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Congress concerning the implementation of this sec-
tion. Such report shall include information on— 
‘‘(A) the development and maintenance of 
the National Rare Disease or Condition Surveil-
lance System; 
‘‘(B) the type of information collected and 
stored in the surveillance system; 
‘‘(C) the use and availability of such infor-
mation, including guidelines for such use; and 
‘‘(D) the use and coordination of databases 
that collect or maintain information on rare dis-
eases or conditions. 
‘‘(k) DEFINITIONS.—In this section: 
‘‘(1) NATIONAL VOLUNTARY HEALTH ASSOCIA-
TION.—The term ‘national voluntary health associa-
tion’ means a national nonprofit organization with 
chapters, other affiliated organizations, or networks 
in States throughout the United States with experi-
ence serving the population of individuals with a 
rare disease or condition and have demonstrated ex-
perience in rare disease or condition research, care, 
and patient services. 
‘‘(2) RARE.—The term ‘rare’, with respect to a 
disease or condition, means having a prevalence of 
fewer than 200,000 individuals in the United States. 
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‘‘(l) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there are authorized to be appro-
priated $10,000,000 for each of fiscal years 2020 through 
2025.’’. 
SEC. 4. INCREASING HEALTH PROFESSIONALS’ AWARENESS 
OF RARE DISEASES. 
(a) IN GENERAL.—The Director of the Agency for 
Healthcare Research and Quality shall expand and inten-
sify the activities of the Agency to increase the awareness 
and knowledge of health care providers about rare diseases 
and conditions. 
(b) DEFINITION.—In this section, the term ‘‘rare dis-
eases and conditions’’, with respect to a disease or condi-
tion, means having a prevalence of fewer than 200,000 
individuals in the United States. 
SEC. 5. REPORT. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services shall seek to enter into an arrangement 
with the National Academies (or another appropriate enti-
ty if the National Academies decline) to update and repub-
lish, by not later than 3 years after the date of enactment 
of this Act, the 2010 report of the National Academies 
entitled ‘‘Rare Diseases and Orphan Products: Accel-
erating Research and Development’’. 
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(b) AUTHORIZATION OF APPROPRIATIONS.—To carry 
out this section, there is authorized to be appropriated 
$1,000,000. 
Æ 
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