Recognizing the significant and often overlooked behavioral health needs experienced by individuals and families affected by rare diseases, and for other purposes.

Sponsor: Paul Tonko (Democratic-NY)May 14, 2026

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Introduced

In Committee

Passed One Chamber

Passed Both Chambers

Signed into Law

Referred to the House Committee on Energy and Commerce.

House would push for better mental health support for rare disease patients and their families.

This resolution would have the House of Representatives formally recognize the often-missed mental health needs of the 25 to 30 million Americans living with rare diseases and their caregivers. It would call on federal agencies to prioritize mental health care in rare disease programs. The resolution would also encourage new support systems for these individuals and families.

What Would Change

Today, about 25 to 30 million Americans with rare diseases and their families often struggle to find mental health support due to shortages of providers and insurance issues. If this resolution passes, the House of Representatives would formally acknowledge these challenges and call on federal agencies and insurance companies to prioritize and improve access to mental health care, peer support, and specialized providers for this community.

Key Provisions

Recognizes the significant mental health needs of rare disease patients and their families.
Affirms mental health care as an essential part of rare disease treatment and federal policy.
Calls on federal agencies like the Department of Health and Human Services, National Institutes of Health, and Centers for Medicare & Medicaid Services to prioritize mental health access in rare disease programs.
Encourages creating and expanding peer support programs for rare disease patients, caregivers, and families.
Urges investment in the mental health workforce, especially for children and teens.
Recommends public and private insurance companies address payment barriers for mental health services for rare disease patients.

View on Congress.gov

HRES 1290 · 119th Congress · May 14, 2026 · AI Summary by gemini-2.5-flash · 10/10

Recognizing the significant and often overlooked behavioral health needs experienced by individuals and families affected by rare diseases, and for other purposes.

What Would Change

Key Provisions

Lobbying Activity