PlainBillCongress, translated.Legislation. Context. Public interest.Referred to the Committee 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 provisions as fall within the jurisdiction of the committee concerned.
Congressional Research Service
Version 00 · Introduced in House · Feb 27, 2025
Health Equity and Rare Disease Act of 2025 or the HEARD Act of 2025
This bill establishes Department of Health and Human Services (HHS) grants and other initiatives to address rare diseases or conditions (e.g., those affecting less than 200,000 people in the United States) in racial and ethnic minority populations.
For example, to advance such purposes, the bill establishes within HHS
Showing the opening paragraphs of the official summary.
grants to public and private nonprofit entities for data collection and public outreach,
grants to health professions schools to improve health care and minority representation in research regarding rare diseases and conditions,
grants to tribal epidemiology centers and tribal and urban Indian health centers for research regarding rare diseases and conditions in tribal communities,
scholarships and educational loan repayment for medical school students who agree to work as health care professionals serving populations with rare diseases or conditions,
initiatives to coordinate research and other activities across the National Institutes of Health, and
public health awareness and education campaigns.
Also, the bill requires HHS to submit various reports to Congress on topics including (1) the federal government’s research and public health activities regarding rare diseases or conditions in minority populations, (2) regulatory barriers to treating rare diseases in Medicare beneficiaries of color, and (3) strategies for research and development of treatments for rare diseases or conditions that disproportionately impact minority populations.
People & committees
Rep. Strickland, Marilyn [D-WA-10] · D–WA
Legislative record
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Referred to the Committee 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 provisions as fall within the jurisdiction of the committee concerned.
Referred to the Committee 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 provisions as fall within the jurisdiction of the committee concerned.
Referred to the Committee 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 provisions as fall within the jurisdiction of the committee concerned.
Introduced in House
Introduced in House
Primary sources
Text links open the official source. We also preserved the text version used in the PlainBill explanation below.
Source last updated: Oct 14, 2026. Consult Congress.gov for the current record.
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PlainBill explanation
Based on the full Introduced in House · 2025-02-27 text. This explanation has not received human editorial review. This overview describes the proposal’s major provisions; it does not establish what its real-world effects would be.
The proposed Health Equity and Rare Disease Act of 2025 would expand federal research, education, and public health work on rare diseases, especially in minority populations. It would support training for health professionals and offer medical students scholarships or educational loan repayment in exchange for serving people with rare diseases. It would also require a survey of FDA policies and programs aimed at increasing the availability of clinical trial data on minority populations and a review of Medicare barriers. These are proposed requirements in the supplied introduced text, not evidence of enacted changes.
This Act may be cited as the Health Equity and Rare Disease Act of 2025 or the HEARD Act of 2025.
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.
The Secretary may award grants, cooperative agreements, and contracts to accredited schools of medicine and nursing, and other health professional training programs, for the development and implementation of programs to provide education and training to health care professionals on the causes and effects of rare diseases and conditions in minority populations.
the individuals agree to serve as health care professionals serving populations with rare diseases or conditions in consideration of the Federal Government agreeing to pay, for each year of such service, up to $50,000 (plus an amount determined by the Secretary on an annual basis to reflect inflation) of the principal and interest of the educational loans of such individuals.
each such individual agrees to serve, for a period of not less than 5 years, as a health care professional primarily serving populations with rare diseases or conditions, in consideration of the Federal Government agreeing to provide to the individual a scholarship for attendance at a school of medicine.
conduct a survey of policies and programs of the Food and Drug Administration to support an increase the availability of clinical trial data on minority populations, with an emphasis on minority populations with rare diseases and conditions
Regulatory barriers under the Medicare program under title XVIII of the Social Security Act (42 U.S.C. 1395 et seq.) that inhibit access to the treatment of rare diseases for Medicare beneficiaries of color
Section 2 would require the National Institutes of Health (NIH) director to expand and coordinate work on equity in rare disease health. The director would distribute any money appropriated for this section among participating national research institutes; this allocation instruction does not itself provide a funding amount.
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.
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 research institutes that are carrying out paragraph (1).
The Secretary would have to maintain a committee coordinating rare disease health equity work across NIH and other federal health programs. Members would include relevant research institute directors or their representatives and relevant federal agencies, including the Centers for Disease Control and Prevention and the Food and Drug Administration.
The Secretary shall maintain a coordinating committee with respect to rare diseases health equity (referred to in this section as the Coordinating Committee) to coordinate activities across the National Institutes and with other Federal health programs and activities relating to rare diseases health equity.
The Coordinating Committee 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 involve health functions or responsibilities relevant to such rare diseases, including the Centers for Disease Control and Prevention and the Food and Drug Administration.
The coordinating committee chair would advise federal health leaders on rare disease health equity and report directly to the NIH director.
the Chair of the Coordinating Committee shall serve as the principal advisor to the Secretary, the Assistant Secretary 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.
The Chair of the Coordinating Committee shall be directly responsible to the Director of NIH.
Within one year after enactment, the committee would have to develop a research and education plan and periodically update it. The plan would set priorities, address medical, psychological, social, and rehabilitation issues, and include input from scientists, patients, and advocacy groups.
Not later than 1 year after the date of the enactment of this section, the Coordinating Committee shall develop a plan for conducting and supporting research and education on rare diseases health equity, and rare diseases or conditions 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 programs 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.
As appropriate, the plan would cover how often rare diseases occur in minority populations, their causes and course over time, differences by sex and racial or ethnic group, better screening, new treatments, and public and professional education. NIH programs addressing rare diseases in minority populations would have to follow the plan.
The plan under paragraph (1) shall, with respect to rare diseases or conditions in minority populations, provide for the following as appropriate: (A) Research to determine the reasons underlying the incidence and prevalence of the diseases or conditions, including among subpopulations. (B) Basic research concerning the etiology and causes of the diseases or conditions. (C) Epidemiological studies to address the frequency and natural history of the diseases or conditions, including any differences among the sexes and among racial and ethnic groups. (D) The development of improved screening techniques. (E) Clinical research for the development and evaluation of new treatments, including new biological agents. (F) Information and education programs for health care professionals and the public.
The Director of NIH shall ensure that programs and activities of the National Institutes of Health regarding rare diseases or conditions in minority populations are implemented in accordance with the plan under paragraph (1).
The bill would use definitions of “minority” and “rare disease or condition” from existing statutes. Those definitions are referenced but not reproduced in the supplied text.
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).
Section 3 would require specified NIH leaders, working together and consulting the Institute's advisory council, to develop a comprehensive federal plan within 180 days after enactment. It would include a strategy to increase diversity in genetic programs within NIH's Therapeutics for Rare and Neglected Diseases program.
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 Advancing 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 collaboration (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 Institutes of Health
Under the same 180-day requirement, those NIH leaders would have to conduct or support research on rare diseases in minority populations, including early detection, diagnosis, treatment, and quality of life. They would also have to conduct or support clinical training and develop guidance for increasing minority health professionals' participation in this research.
Not later than 180 days after the date of enactment of this section
(2) conduct or support through grants or cooperative agreements basic, clinical, and translational research on rare diseases and conditions in minority populations, including research on— (A) early detection, diagnosis, and treatment of such diseases and conditions in such populations; and (B) improving the quality of life for individuals with rare diseases or conditions and their families; (3) conduct or support clinical training programs for physicians and other health care practitioners with respect to detecting, diagnosing, and treating such diseases and conditions in such populations; and (4) develop guidance for increasing participation of health professionals who are members of minority groups (as defined in section 464z–3) in research conducted or supported by the National Institutes of Health on such diseases and conditions in such populations.
Section 4 would add grants, coordinated with the Centers for Disease Control and Prevention, for public and private nonprofit organizations to collect, analyze, and report data on rare diseases in minority populations. The grants would also support outreach explaining health information, available services, and management of these conditions.
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 populations, including on epidemiological data with respect to incidence of such diseases and conditions in such populations; (B) conduct outreach and engagement activities with the minority populations impacted by such rare diseases and conditions by— (i) improving health literacy with respect to rare diseases and conditions; (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 conditions.
Section 4 would require reports to Congress about these grant activities beginning no later than two years after enactment. It calls for reporting on a “biannual basis” without clarifying that term.
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 report describing the activities carried out pursuant to paragraph (11).
Section 5 would require a grant program for accredited medical and nursing schools and other health professional training programs. Training would address rare disease care, care delivered remotely through telehealth, and relevant research. Applicants would have to meet the Secretary's application requirements.
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 individuals who have rare diseases or conditions (as defined in section 526 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 360bb)); (2) to improve the provision of care to such individuals via telehealth; and (3) to conduct research relevant to rare diseases and conditions.
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 Secretary may require.
Recipients of these training grants would have to report periodically on their activities and, where applicable, the training's impact on patient outcomes. The Secretary would have to report to Congress within two years after enactment and could identify and share training best practices.
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.
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 disseminated under subsection (d).
The Secretary may identify and disseminate best practices for the training described in subsection (a).
The Secretary could separately fund accredited medical and nursing schools and other health professional training programs to teach professionals about the causes and effects of rare diseases in minority populations. This funding authority would be discretionary.
The Secretary may award grants, cooperative agreements, and contracts to accredited schools of medicine and nursing, and other health professional training programs, for the development and implementation of programs to provide education and training to health care professionals on the causes and effects of rare diseases and conditions in minority populations.
Through the Health Resources and Services Administration, the Secretary could fund public and private nonprofit organizations, including Tribal entities, to establish mentoring programs for health professionals seeking to treat people with rare diseases.
The Secretary, acting through the Administrator of the Health Resources and Services Administration, may award grants, contracts, or cooperative agreements to public and nonprofit private entities (including Tribal entities) for the establishment of a mentoring program for health care professionals seeking to treat patients with rare diseases and conditions.
The Secretary would have to establish educational loan repayment contracts for eligible people who agree to serve populations with rare diseases. For each year of service, the government would pay up to $50,000, plus an annual inflation adjustment, toward loan principal and interest. Eligibility would cover people enrolled or accepted as full-time or part-time medical students.
The Secretary shall establish a program of entering into contracts with eligible individuals under which the individuals agree to serve as health care professionals serving populations with rare diseases or conditions in consideration of the Federal Government agreeing to pay, for each year of such service, up to $50,000 (plus an amount determined by the Secretary on an annual basis to reflect inflation) of the principal and interest of the educational loans of such individuals.
In this subsection, the term eligible individual means an individual who is enrolled or accepted for enrollment as a full-time or part-time student in a school of medicine.
When setting annual loan repayment amounts, the Secretary would have to consider how many contracts available funding could support and incentives to begin and continue serving people with rare diseases, including after required service ends. Existing National Health Service Corps loan repayment provisions would apply unless inconsistent with the new program's main provision; those incorporated provisions are not supplied, so their detailed conditions cannot be established here.
the Secretary shall consider the extent to which each such determination— (A) affects the ability of the Secretary to maximize the number of contracts that can be provided under the program from the amounts appropriated for such contracts; (B) provides an incentive to serve as health care professionals serving populations with rare diseases or conditions; and (C) provides an incentive with respect to the health professional involved to remain serving populations with rare diseases or conditions, including after the completion of the period of obligated service under the program.
With respect to the National Health Service Corps Loan Repayment Program established in subpart III of part D of title III of this Act, the provisions of such subpart shall, except as inconsistent with paragraph (1), apply to the program established in this section in the same manner and to the same extent as such provisions apply to the National Health Service Corps Loan Repayment Program.
A required scholarship program would exchange medical school scholarships for at least five years of work primarily serving populations with rare diseases. People enrolled or accepted as full-time or part-time medical students would be eligible. Existing National Health Service Corps scholarship provisions would apply except where inconsistent with the new section; those incorporated provisions are not supplied, so their detailed conditions cannot be established here.
The Secretary shall carry out a program of entering into contracts with eligible individuals under which each such individual agrees to serve, for a period of not less than 5 years, as a health care professional primarily serving populations with rare diseases or conditions, in consideration of the Federal Government agreeing to provide to the individual a scholarship for attendance at a school of medicine.
(2) Eligible individuals In this subsection, the term eligible individual means an individual who is enrolled or accepted for enrollment as a full-time or part-time student in a school of medicine. (3) Applicability of certain provisions The provisions of subpart III of part D of title III shall, except as inconsistent with this section, apply to the program established in paragraph (1) in the same manner and to the same extent as such provisions apply to the National Health Service Corps Scholarship Program established in such subpart.
Section 6 would allow grants to eligible medical and nursing schools and other health professional training programs involved in rare disease and minority health research. The grants would support recruiting and retaining minority researchers, including through more internships and mentoring opportunities.
the Secretary may award grants to eligible entities involved in research on rare diseases and minority health to establish programs to increase the recruitment and retention of members of minority groups to conduct research in matters relating to the cause, diagnosis, prevention, and treatment of rare diseases or conditions, including by expanding the number of internships and mentoring opportunities.
the term eligible entities means accredited schools of allopathic medicine, osteopathic medicine, and nursing, and other health professional training programs.
Section 7 would require the Secretary of Health and Human Services, through NIH and in consultation with the Centers for Disease Control and Prevention, to report to Congress within two years after enactment. The submission would describe federal research and public health activities, list known rare diseases heavily or disproportionately affecting minority populations, and analyze gaps in the data.
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 Centers for Disease Control and Prevention, shall submit to Congress— (1) a report on research and public health activities 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.
Section 8 would require research and public awareness campaigns about rare diseases in minority populations through the Centers for Disease Control and Prevention. A public education program, run directly or through grants or contracts, would work with existing national campaigns and provide culturally and linguistically appropriate information about prevention and management.
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall conduct or support research and carry out public health awareness campaigns with respect to rare diseases and conditions in minority populations (as defined in section 409K).
The Secretary shall, directly or through grants or contracts, establish a public education program in cooperation with existing national public awareness campaigns to increase awareness about rare diseases and conditions in minority populations through culturally and linguistically appropriate information campaigns about prevention and management of rare diseases and conditions.
Section 9 would require the Secretary, through the Food and Drug Administration, to survey agency policies and programs supporting more clinical trial data on minority populations, especially those with rare diseases. The survey and a report to Congress would be due within two years after enactment.
Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services, acting through the Commissioner of Food and Drugs, shall— (1) conduct a survey of policies and programs of the Food and Drug Administration to support an increase the availability of clinical trial data on minority populations, with an emphasis on minority populations with rare diseases and conditions; and (2) submit to Congress a report
The clinical trial report would include findings and recommendations for legal or regulatory changes to increase available data. It would also recommend strategies for drug manufacturers' inclusion of minority populations in treatment research and for developing treatments for rare diseases that disproportionately affect those populations. This provision calls for recommendations rather than directly imposing new manufacturer requirements.
a report containing— (A) the findings of such survey; (B) the Secretary’s recommendations for statutory or regulatory changes to increase the availability of such data; (C) the Secretary’s recommendations for strategies to encourage drug manufacturers to address racial equity and inclusion in research and development of treatments of rare diseases or conditions that disproportionately impact minority populations; and (D) the Secretary's recommendations for strategies to address research and development of treatments of rare diseases or conditions that disproportionately impact minority populations.
Section 10 would require grants to Tribal Epidemiology Centers and Tribal and Urban Indian Health Centers for clinically and culturally appropriate research and other rare disease activities in Native American or Tribal communities. Grants could support coordinating data collection about prevention, diagnosis, treatment, and care by professionals serving American Indian and Alaska Native populations.
The Secretary, acting through the Service, shall award grants to Tribal Epidemiology Centers and Tribal and Urban Indian Health Centers to support clinically and culturally appropriate research and other activities with respect to rare diseases and conditions in Native American or Tribal communities.
The activities funded through a grant under subsection (a) may include coordination of data collection on the prevention, diagnosis, treatment, and care of rare diseases and conditions by health care professionals serving American Indian and Alaska Native populations.
Section 11 would require a Medicare review and report within 180 days after enactment. It would examine regulatory barriers to rare disease treatment for beneficiaries of color, barriers to providers improving that care, and Medicare requirements for rare disease telehealth services. The report would include recommendations the Secretary considers appropriate; this section would not itself change those Medicare requirements.
Not later than 180 days after the date of enactment of this Act, the Secretary of Health and Human Service shall conduct a review of and submit to Congress a report on the following: (1) Regulatory barriers under the Medicare program under title XVIII of the Social Security Act (42 U.S.C. 1395 et seq.) that inhibit access to the treatment of rare diseases for Medicare beneficiaries of color, including barriers that inhibit health care providers from improving care related to such diseases for such beneficiaries. (2) Requirements relating to the furnishing of telehealth services under such title insofar as such services relate to the treatment of rare diseases. Such report shall include any recommendations determined appropriate by the Secretary based on such review.
The supplied actions snapshot, updated October 14, 2026, records introduction in the House on February 27, 2025, and referral that day to the Energy and Commerce, Ways and Means, and Natural Resources committees for provisions within their respective jurisdictions. This snapshot does not establish subsequent passage or enactment.
Source snapshot updated 2026-10-14T15:51:36Z.
2025-02-27: Introduced in House
2025-02-27: Referred to the Committee 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 provisions as fall within the jurisdiction of the committee concerned.
A closer look
Reviewed version: Introduced in House · 2025-02-27. These findings describe provisions and who may benefit; they are not judgments of waste, corruption, or motive.
This review covers the supplied bill text. “None identified” does not rule out provisions in later versions or accompanying reports and disclosures.
Provisions outside the bill’s main subject, or policy changes attached to appropriations.
None identified in the reviewed text
No unrelated provision or policy change attached to appropriations was identified in the complete supplied introduced text. This conclusion does not establish the absence of riders in other versions or accompanying materials.
Spending directed to particular recipients or places outside ordinary competitive or formula-based allocation.
None identified in the reviewed text
No congressionally directed spending for a particular recipient or place was identified in the complete supplied introduced text. Program eligibility and funding authority alone do not establish an earmark. This conclusion is limited to this version and does not resolve formal earmark status in accompanying materials.
Narrow exceptions, exemptions, or preferential treatment that warrant a closer look.
None identified in the reviewed text
No special carve-out, exemption, or preferential exception beyond the programs' intended beneficiaries was identified in the complete supplied introduced text. This conclusion is limited to this version and does not establish absence in other versions or accompanying materials.
Full text preserved for this analysis. Legislative record snapshot: Oct 14, 2026. How PlainBill uses AI