HEARD Act of 2025

The Health Equity and Rare Disease Act of 2025 focuses on improving care, research, and awareness for rare diseases—conditions that affect fewer than 200,000 people—especially in communities of color. It directs federal health agencies to expand and better coordinate research, and to set a national plan within one year to guide this work. It also funds data collection, training for health professionals (including telehealth skills), and public education to help people find care sooner and manage their conditions .

The bill offers scholarships and up to $50,000 per year in student loan repayment for medical students who agree to serve people with rare diseases, helping grow the workforce in this area. It supports recruiting more minority researchers, boosts diversity in clinical trials, and provides grants to Tribal Epidemiology Centers and Tribal and Urban Indian Health Centers to study rare diseases in Native communities. It requires reports on progress, including studies of clinical trial diversity and a review of Medicare rules that may limit access to rare disease treatments for beneficiaries of color .

Key points

• Who is affected: People living with rare diseases, especially racial and ethnic minority groups; doctors, nurses, and medical students; Tribal communities .
• What changes: Expanded NIH research and a coordinated plan; grants for data collection, training, and public awareness; scholarships/loan help for medical students; efforts to increase minority researchers and clinical trial diversity; Tribal health research grants; required reports to Congress .
• When: A national NIH plan due within 1 year; a broader federal plan due within 180 days; major reports to Congress due within 2 years (and some every 2 years after that); a Medicare review due within 180 days .