The HEARD Act of 2025 (Health Equity and Rare Disease Act of 2025) would substantially expand federal efforts to study and address rare diseases that disproportionately affect minority populations. It would require the National Institutes of Health (NIH) to broaden and coordinate research on rare diseases with a focus on health equity, create cross-agency coordinating mechanisms (involving NIH, CDC, FDA and other agencies), and develop a comprehensive plan to guide federal actions. The bill also enhances data collection and reporting, expands training and workforce development for health professionals in rare diseases (including telehealth), offers loan repayment and scholarships to encourage service in affected communities, and seeks to improve minority representation in research. Additional provisions aim to support tribal epidemiology centers, improve public awareness, examine Medicare barriers to care, and push for greater clinical trial diversity. In short, the bill aims to (1) boost federal research and coordination on rare diseases in minority populations, (2) create a formal, collaborative plan and ongoing governance across agencies, (3) strengthen data collection, training, and incentives for health professionals serving these communities, and (4) address access, awareness, and trial diversity to improve outcomes for affected individuals and communities.
Key Points
- 1NIH expansion and cross-agency coordination on rare diseases health equity
- 2- The NIH Director must expand, intensify, and coordinate rare disease health equity activities, with a Coordinating Committee drawing from NIH institutes and other federal agencies (e.g., CDC, FDA) to align efforts.
- 3Comprehensive collaborative plan to address rare diseases in minority populations
- 4- A 180-day-driven federal plan (and ongoing updates) to address these diseases, including strategies to diversify genetic programs and expand training and participation by minority researchers and health professionals.
- 5Data, outreach, and reporting requirements
- 6- New grants to collect/analyze data on rare diseases in minority populations, conduct outreach and health literacy efforts, and biannual congressional reporting detailing activities and data gaps.
- 7Workforce development and training programs
- 8- Grants and programs to train physicians, nurses, and other health professionals (including telehealth), plus mentoring, scholarships, and loan repayment for those serving minority populations with rare diseases.
- 9Increasing minority representation in research and targeted community programs
- 10- Grants to expand minority recruitment/retention in rare disease research; tribal epidemiology center grants to support culturally appropriate research in Native/Tribal communities; and efforts to assess and improve clinical trial diversity, Medicare barriers, and awareness campaigns.