HEARD Act of 2025

Summary

Creates a coordinated federal effort to improve research, data, clinical training, and public outreach on rare diseases that disproportionately affect racial and ethnic minority populations and Tribal communities. The legislation funds new grant programs (including for Tribal epidemiology centers and health centers), requires NIH, CDC, FDA, and other HHS components to develop plans and reports, and establishes training, mentoring, scholarship, and loan repayment programs to boost the clinician and researcher workforce focused on rare diseases in minority populations. Requires multiple agency reviews and reports (many with 180-day to 2-year deadlines), establishes a Federal Coordinating Committee at NIH, creates grants and education programs for schools and health centers, directs public health awareness campaigns, and tasks FDA with surveying clinical trial data availability for minority groups. Most programs require future appropriations and create new grant and program authorities rather than immediate appropriations.

• Creates a Tribal epidemiology center grant program to support rare-disease research and data coordination in Tribal and Urban Indian health settings.
• Directs NIH to form a Federal Coordinating Committee and produce a multiagency plan for rare-disease health equity focused on minority populations.
• Requires agency reviews and reports on Medicare barriers, telehealth, federal research activities, and FDA clinical-trial data availability with deadlines from 180 days to two years.
• Authorizes grants to schools and training programs, mentoring programs, and HRSA-administered scholarships and loan repayment (up to $50,000/year) to grow the clinician workforce for rare diseases.
• Expands CDC grant authority for epidemiology, data collection, outreach, and culturally appropriate public education targeting rare diseases in minority populations.
• Directs NIH, CDC, and FDA to improve research inclusion, identify data gaps, and recommend statutory/regulatory changes to increase trial diversity and treatments for affected minority populations.
• Most programs are authorized but depend on future appropriations—no direct appropriations are included in the text.
• Several provisions reference existing statutory definitions for 'minority' and 'rare disease' and apply existing program rules where consistent.
• Requires biannual and multi-year reporting to Congress to track progress and gaps.
• Focuses on improving equity in rare-disease research, clinical training, surveillance, and public awareness rather than creating broad entitlement changes.