I 
119TH CONGRESS 
1ST SESSION H. R. 1750 
To amend the Public Health Service Act to provide for greater investments 
in research on rare diseases and conditions disproportionately affecting 
minority populations, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 27, 2025 
Ms. STRICKLAND introduced the following bill; which was referred to the Com-
mittee on Energy and Commerce, and in addition to the Committees on 
Ways and Means, and Natural Resources, for a period to be subsequently 
determined by the Speaker, in each case for consideration of such provi-
sions as fall within the jurisdiction of the committee concerned 
A BILL 
To amend the Public Health Service Act to provide for 
greater investments in research on rare diseases and 
conditions disproportionately affecting minority popu-
lations, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Health Equity and 
Rare Disease Act of 2025’’ or the ‘‘HEARD Act of 2025’’. 
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SEC. 2. NIH EXPANSION, INTENSIFICATION, AND COORDI-
NATION OF RESEARCH ON RARE DISEASES 
HEALTH EQUITY. 
Part B of title IV of the Public Health Service Act 
(42 U.S.C. 284 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 409K. RARE DISEASES HEALTH EQUITY. 
‘‘(a) EXPANSION, INTENSIFICATION, AND COORDINA-
TION OF ACTIVITIES.— 
‘‘(1) IN GENERAL.—The Director of NIH shall 
expand, intensify, and coordinate research and other 
activities of the National Institutes of Health with 
respect to rare diseases health equity. 
‘‘(2) ALLOCATIONS
BY
DIRECTOR
OF
NIH.— 
With respect to amounts appropriated to carry out 
this section for a fiscal year, the Director of NIH 
shall allocate the amounts among the national re-
search institutes that are carrying out paragraph 
(1). 
‘‘(b) COORDINATING COMMITTEE.— 
‘‘(1) IN GENERAL.—The Secretary shall main-
tain a coordinating committee with respect to rare 
diseases health equity (referred to in this section as 
the ‘Coordinating Committee’) to coordinate activi-
ties across the National Institutes and with other 
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Federal health programs and activities relating to 
rare diseases health equity. 
‘‘(2) COMPOSITION.—The Coordinating Com-
mittee shall be composed of— 
‘‘(A) the directors (or their designees) of 
each of the national research institutes involved 
in research with respect to rare diseases and 
minority health or health equity; and 
‘‘(B) representatives of all other Federal 
departments and agencies whose programs in-
volve health functions or responsibilities rel-
evant to such rare diseases, including the Cen-
ters for Disease Control and Prevention and the 
Food and Drug Administration. 
‘‘(3) CHAIR.— 
‘‘(A) IN GENERAL.—With respect to rare 
diseases health equity, the Chair of the Coordi-
nating Committee shall serve as the principal 
advisor to the Secretary, the Assistant Sec-
retary for Health, and the Director of NIH, 
and shall provide advice to the Director of the 
Centers for Disease Control and Prevention, the 
Commissioner of Food and Drugs, and other 
relevant agencies. 
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‘‘(B) DIRECTOR
OF
NIH.—The Chair of 
the Coordinating Committee shall be directly re-
sponsible to the Director of NIH. 
‘‘(c) PLAN FOR NIH ACTIVITIES.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the date of the enactment of this section, the Coordi-
nating Committee shall develop a plan for con-
ducting and supporting research and education on 
rare diseases health equity, and rare diseases or con-
ditions in minority populations, through the national 
research institutes. The Coordinating Committee 
shall periodically review and revise the plan. The 
plan shall— 
‘‘(A) provide for a broad range of research 
and education activities relating to biomedical, 
psychosocial, and rehabilitative issues, including 
studies of the disproportionate impact of such 
diseases or conditions on minority populations; 
‘‘(B) identify priorities among the pro-
grams and activities of the National Institutes 
of Health regarding such diseases or conditions; 
and 
‘‘(C) reflect input from a broad range of 
scientists, patients, and advocacy groups. 
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diseases or conditions in minority populations are 
implemented in accordance with the plan under 
paragraph (1). 
‘‘(d) DEFINITIONS.—In this section: 
‘‘(1) The term ‘minority’ has the meaning given 
such term in section 464z–3. 
‘‘(2) The term ‘rare disease or condition’ has 
the meaning given such term in section 526 of the 
Federal Food, Drug, and Cosmetic Act (21 U.S.C. 
360bb).’’. 
SEC. 3. COLLABORATIVE COMPREHENSIVE PLAN TO AD-
DRESS RARE DISEASES AND CONDITIONS IN 
MINORITY POPULATIONS. 
Subpart 20 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285t et seq.) is amended by adding 
at the end the following: 
‘‘SEC. 464z–7. COLLABORATIVE COMPREHENSIVE PLAN TO 
ADDRESS RARE DISEASES AND CONDITIONS 
IN MINORITY POPULATIONS. 
‘‘Not later than 180 days after the date of enactment 
of this section, the Director of NIH, the Director of the 
Institute, the Director of the National Center for Advanc-
ing Translational Sciences, the Director of the National 
Heart, Lung, and Blood Institute, and the directors of the 
other agencies of the National Institutes of Health in col-
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laboration (and in consultation with the advisory council 
for the Institute) shall— 
‘‘(1) develop a comprehensive Federal plan to 
address rare diseases and conditions in minority 
populations (as those terms are defined in section 
409K), including a strategy to increase diversity in 
genetic programs at the program for Therapeutics 
for Rare and Neglected Diseases at the National In-
stitutes of Health; 
‘‘(2) conduct or support through grants or co-
operative 
agreements 
basic, 
clinical, 
and 
translational research on rare diseases and condi-
tions in minority populations, including research 
on— 
‘‘(A) early detection, diagnosis, and treat-
ment of such diseases and conditions in such 
populations; and 
‘‘(B) improving the quality of life for indi-
viduals with rare diseases or conditions and 
their families; 
‘‘(3) conduct or support clinical training pro-
grams for physicians and other health care practi-
tioners with respect to detecting, diagnosing, and 
treating such diseases and conditions in such popu-
lations; and 
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‘‘(4) develop guidance for increasing participa-
tion of health professionals who are members of mi-
nority groups (as defined in section 464z–3) in re-
search conducted or supported by the National Insti-
tutes of Health on such diseases and conditions in 
such populations.’’. 
SEC. 4. GRANTS TO COLLECT AND ANALYZE DATA ON RARE 
DISEASES AND CONDITIONS IN MINORITY 
POPULATIONS. 
Section 1707(b) of the Public Health Service Act (42 
U.S.C. 300u–6(b)) is amended by adding at the end the 
following: 
‘‘(11) In coordination with the Director of the 
Centers for Disease Control and Prevention, award 
grants to public and private nonprofit entities to— 
‘‘(A) collect, analyze, and report data on 
rare diseases and conditions in minority popu-
lations, including on epidemiological data with 
respect to incidence of such diseases and condi-
tions in such populations; 
‘‘(B) conduct outreach and engagement ac-
tivities with the minority populations impacted 
by such rare diseases and conditions by— 
‘‘(i) improving health literacy with re-
spect to rare diseases and conditions; 
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‘‘(ii) disseminating information on 
health and community services related to 
rare diseases and conditions; and 
‘‘(iii) providing information regarding 
the maintenance of rare diseases and con-
ditions. 
‘‘(12) Submit to Congress, on a biannual basis 
(beginning not later than 2 years after the date of 
the enactment of the HEARD Act of 2025), a re-
port describing the activities carried out pursuant to 
paragraph (11).’’. 
SEC. 5. PHYSICIAN TRAINING PROGRAMS WITH RESPECT 
TO RARE DISEASES. 
Subpart II of part C of title VII of the Public Health 
Service Act is amended by adding at the end the following: 
‘‘SEC. 749C. PHYSICIAN TRAINING PROGRAMS WITH RE-
SPECT TO RARE DISEASES. 
‘‘(a) IN GENERAL.—The Secretary shall establish a 
program to award grants to accredited schools of 
allopathic medicine, osteopathic medicine, and nursing, 
and other health professional training programs for the 
training of health care professionals— 
‘‘(1) to improve the provision of care to individ-
uals who have rare diseases or conditions (as defined 
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in section 526 of the Federal Food, Drug, and Cos-
metic Act (21 U.S.C. 360bb)); 
‘‘(2) to improve the provision of care to such in-
dividuals via telehealth; and 
‘‘(3) to conduct research relevant to rare dis-
eases and conditions. 
‘‘(b) ELIGIBILITY.—To be eligible for a grant under 
subsection (a), an entity described in such subsection shall 
submit to the Secretary an application at such time, in 
such manner, and containing such information as the Sec-
retary may require. 
‘‘(c) REPORTING REQUIREMENTS.— 
‘‘(1) PERIODIC REPORTS.—Each entity awarded 
a grant under this section shall periodically submit 
to the Secretary a report on the status of activities 
conducted using the grant, including a description of 
the impact of such training on patient outcomes, as 
applicable. 
‘‘(2) REPORT TO CONGRESS.—Not later than 2 
years after the date of enactment of this section, the 
Secretary shall submit a report to Congress on the 
activities conducted using grants under subsection 
(a) and any best practices identified and dissemi-
nated under subsection (d). 
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SEC. 7. REPORT TO CONGRESS ON FEDERAL EFFORTS ON 
RARE DISEASES AND CONDITIONS IN MINOR-
ITY POPULATIONS. 
Not later than 2 years after the date of enactment 
of this Act, the Secretary of Health and Human Services, 
acting through the Director of the National Institutes of 
Health and in consultation with the Director of the Cen-
ters for Disease Control and Prevention, shall submit to 
Congress— 
(1) a report on research and public health ac-
tivities carried out by the Federal Government with 
respect to rare diseases or conditions in minority 
populations (as those terms are defined in section 
409K of the Public Health Service Act, as added by 
section 2 of this Act); 
(2) a comprehensive list of known rare diseases 
and conditions that impact minority populations 
heavily or disproportionately; and 
(3) an analysis of data gaps with respect to 
rare diseases and conditions and the effect of such 
diseases and conditions on minority populations. 
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