Analyses / Public Summary / 119 · HRES 1290 Public Summary

119-HRES-1290 Journalist Public Summary

119 · HRES 1290 Recognizing the significant and often overlooked behavioral health needs experienced by individuals and families affected by rare diseases, and for other purposes.

health_and_safety Health

A bipartisan House resolution urges better mental health support for people with rare diseases and their families—calling on HHS, NIH, and CMS to prioritize access, peer support, workforce capacity, reimbursement fixes, and clinician education; introduced May 14, 2026, by Reps. Paul Tonko and Don Bacon. (tonko.house.gov)

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Journalist
Published
15 May 2026
Updated
15 May 2026
Tags
public-summary · health · rare-diseases
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Public Summary

Headline Summary: A nonbinding House resolution highlights the mental health strain on rare‑disease patients and caregivers and urges federal agencies and health systems to integrate behavioral health into rare‑disease care. (tonko.house.gov)

What It Does: The resolution recognizes that 25–30 million Americans—many of them children—live with rare diseases and often face long diagnostic journeys and limited treatment options. It urges federal priorities and health‑system steps to: integrate behavioral health into rare‑disease care; expand evidence‑informed peer support; strengthen culturally competent care; invest in the behavioral‑health workforce (especially child and adolescent providers); address reimbursement barriers to integrated care; and incentivize continuing medical education on rare diseases’ psychosocial needs. (tonko.house.gov)

  • Who’s For It: Sponsored by Rep. Paul Tonko (D‑NY) with Rep. Don Bacon (R‑NE). (tonko.house.gov)
  • Endorsers include NAMI (National Alliance on Mental Illness), the Caregiver Action Network, the American Psychological Association, and Give an Hour, citing the mental‑health toll on rare‑disease families and the need for better access to care. (tonko.house.gov)
  • Who’s Against It: No formal opposition statements were identified as of May 15, 2026. Because this is a simple House resolution, it does not have the force of law or go to the President. (senate.gov)

What’s Next: Introduced on May 14, 2026, the measure awaits committee consideration. If the House adopts it, it would state the chamber’s position but would not change federal law or funding and would not be sent to the President. (tonko.house.gov)

Discussion