# Understanding the HEARD Act of 2025

This bill focuses on rare diseases that disproportionately affect minority communities and aims to increase research, training, and awareness around these conditions. Think of it as a coordinated effort to shine a light on health problems that have historically been overlooked or understudied in certain populations.

The bill creates several new research and training initiatives. The National Institutes of Health will establish a coordinating committee to oversee research on rare diseases affecting minority populations, and they'll develop a comprehensive plan within a year to guide this work. The government will fund grants to collect and analyze data on how rare diseases impact different communities, which is important because we often don't have good information about how diseases affect people differently based on race or ethnicity. The bill also creates new training programs for doctors, nurses, and other health professionals to better understand and treat rare diseases, including through telehealth services for patients in remote areas.

To attract more healthcare workers to this field, the bill establishes loan repayment programs and scholarships for physicians and genetic counselors who commit to serving patients with rare diseases. It also funds mentoring programs and creates grants to help medical schools recruit and retain minority researchers interested in studying rare diseases. Additionally, the bill requires the FDA to survey and report on how well clinical trials include diverse populations, and it directs the Centers for Disease Control and Prevention to run public awareness campaigns about rare diseases in minority communities using culturally appropriate messaging.

The bill also extends these efforts to Native American communities by funding Tribal Epidemiology Centers to conduct research on rare diseases affecting American Indian and Alaska Native populations. Finally, the government will review Medicare policies to identify barriers that prevent people of color from accessing treatment for rare diseases and will report back to Congress with recommendations for improvement.

HEARD Act of 2025

Strickland, Marilyn

Health Equity and Rare Disease Act of 2025 or the HEARD Act of 2025This 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.&nbsp;For example, to advance such purposes, the bill establishes within&nbsp;HHS<ul><li>grants to public and private nonprofit entities for data collection and public outreach,</li><li>grants to health professions schools to improve health care and minority representation in research regarding rare diseases and conditions,</li><li>grants to tribal epidemiology centers and tribal and urban Indian health centers for research regarding rare diseases and conditions in tribal communities,</li><li>scholarships and educational loan repayment for medical school students who agree to work as health care professionals serving populations with rare diseases or conditions,</li><li>initiatives to coordinate research and other activities across the National Institutes of Health, and</li><li>public health awareness and education campaigns.</li></ul>Also, the bill requires&nbsp;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.