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Adds a new section (designated 317W) to Part B of title III of the Public Health Service Act establishing research and public education/awareness campaign requirements with respect to rare diseases and conditions in minority populations, to be carried out by the Secretary acting through the Director of the CDC.
Adds a new section 487E to Part G of title IV of the Public Health Service Act authorizing the Secretary to award grants to eligible entities to establish programs to increase recruitment and retention of members of minority groups to conduct research on rare diseases and conditions and defining eligible entities.
Adds new section 464z–7 to Subpart 20 of part C of title IV of the Public Health Service Act establishing a collaborative comprehensive Federal plan and related research, training, and guidance on rare diseases and conditions in minority populations.
Adds a new section (titled '227 Tribal epidemiology center grant program') to Title II of the Indian Health Care Improvement Act (25 U.S.C. 1621 et seq.), establishing a grant program to award grants to Tribal Epidemiology Centers and Tribal and Urban Indian Health Centers to support clinically and culturally appropriate research and related activities regarding rare diseases and conditions in Native American or Tribal communities.
Adds new paragraphs (11) and (12) to section 1707(b) authorizing, in coordination with the Director of the CDC, grants to collect/analyze/report data on rare diseases and conditions in minority populations and requiring biannual reports to Congress beginning not later than 2 years after enactment.
Adds a new provision (titled "409K. Rare diseases health equity") to Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.) establishing NIH duties to expand, coordinate, and plan research on rare diseases health equity, a coordinating committee, plan requirements, and definitions.
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 February 27, 2025 by Marilyn Strickland · Last progress February 27, 2025
Creates new grants, plans, and training programs to improve rare disease research, care, and public awareness in Tribal communities and other racial and ethnic minority populations. It directs the Indian Health Service, NIH, CDC, and FDA to coordinate research, expand the health workforce, and remove barriers to equitable treatment.
The law requires multiple reports and strategic plans on rare diseases, including a Medicare policy review within 180 days, NIH and CDC actions to build data and outreach, scholarships and loan repayment for clinicians, initiatives to recruit minority researchers, and an FDA study of ways to improve clinical trial inclusion for people of color, especially for rare conditions.