H.R. 1750: Health Equity and Rare Disease Act of 2025

This bill, known as the Health Equity and Rare Disease Act of 2025 (HEARD Act), aims to enhance research, education, and healthcare delivery related to rare diseases, particularly those affecting minority populations. Here are the main components of the bill:

Research Expansion and Coordination

The bill mandates that the Director of the National Institutes of Health (NIH) expands, intensifies, and coordinates research efforts focusing on health equity concerning rare diseases. This includes:

• Allocating resources among various national research institutes for this purpose.
• Establishing a coordinating committee that includes directors of relevant NIH institutes and representatives from other federal health agencies to ensure comprehensive approaches to rare diseases health equity.

Comprehensive Planning

The Coordinating Committee is tasked with developing a detailed plan within one year of the bill's enactment, addressing:

• The biomedical, psychosocial, and rehabilitative issues related to rare diseases.
• Research priorities, focusing on the impact of these diseases on minority populations.
• Implementation of education programs for healthcare professionals and the public.

Grants for Data Collection and Community Engagement

The bill proposes grants to organizations for:

• Collecting and analyzing data on rare diseases in minority populations.
• Improving health literacy and providing information on health services related to these diseases.

Healthcare Professional Training

A program will be established to provide grants to medical and nursing schools for training health professionals on:

• Caring for patients with rare diseases using telehealth and through direct treatment.
• Conducting research pertinent to rare diseases.

Scholarship and Loan Repayment Programs

To encourage health professionals to work with populations affected by rare diseases, the bill introduces:

• A loan repayment program up to $50,000 per year for healthcare professionals who serve these communities.
• A scholarship program for students who commit to serving in these areas for at least five years.

Mentorship and Recruitment Programs

The bill encourages the establishment of mentorship programs for healthcare providers working with rare diseases, as well as initiatives to increase the representation of minority groups in rare disease research.

Public Health Awareness Campaigns

The bill mandates public health awareness campaigns aimed at educating minority populations about rare diseases and improving their management and prevention through culturally and linguistically appropriate methods.

Federal Reports and Recommendations

Within two years of the bill's enactment, the Secretary of Health and Human Services is required to report on:

• The federal activities addressing rare diseases in minority populations.
• Identifying known rare diseases that disproportionately affect these populations.
• Data gaps related to these diseases and their impact on minority groups.

Medicare Review

The bill requires a review of Medicare regulations that may pose barriers to treatment access for beneficiaries of color suffering from rare diseases.

Tribal Epidemiology Support

Grants will be provided to Tribal Epidemiology Centers to support research and activities related to rare diseases in Native American and Tribal communities.

Relevant Companies

• NVS (Novartis AG) - A pharmaceutical company that develops treatments for rare diseases, which may lead to increased demand for their therapies due to the bill's focus on rare diseases.
• REGN (Regeneron Pharmaceuticals) - Known for developing medications that treat rare conditions, legal changes could expand their market opportunities significantly.
• ALNY (Alnylam Pharmaceuticals) - Focused on RNA interference therapies for rare diseases, increased funding and focus on research may enhance their revenue potential.