H.Res. 1290

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1290 Introduced in House (IH)]

<DOC>

119th CONGRESS
2d Session
H. RES. 1290

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

_______________________________________________________________________

IN THE HOUSE OF REPRESENTATIVES

May 14, 2026

Mr. Tonko (for himself and Mr. Bacon) submitted the following 
resolution; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

RESOLUTION

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

Whereas rare diseases affect an estimated 25,000,000 to 30,000,000 Americans, 
more than half of whom are children, and many of the individuals and 
families affected by rare diseases experience yearslong diagnostic 
journeys marked by uncertainty, misdiagnosis, and delayed treatment;
Whereas behavioral health conditions, including anxiety, depression, trauma-
related symptoms, and caregiver burnout, are common for rare disease 
patients and caregivers, and such conditions are the predictable 
consequences of the structural challenges inherent in rare disease care 
rather than reflections of a personal weakness;
Whereas access to behavioral health care for rare disease patients and 
caregivers remains limited due to the shortages of trained clinicians, 
geographic barriers, low reimbursement rates, and fragmented care models 
that rarely integrate behavioral health;
Whereas peer support programs have demonstrated significant benefit in reducing 
isolation, improving coping skills, and strengthening community 
resilience for rare disease patients and caregivers, yet such programs 
remain inconsistently available, unstandardized, and insufficiently 
supported across States and health systems;
Whereas culturally competent and culturally humble behavioral health care for 
individuals and families affected by rare diseases is essential to 
ensuring equitable access, reducing disparities, and meeting the needs 
of diverse communities that are disproportionately affected by delayed 
diagnoses, stigma, and systemic barriers;
Whereas the behavioral health workforce faces ongoing shortages, particularly in 
child and adolescent psychiatry, psychology, social work, and community-
based behavioral health roles, limiting the availability of specialized 
care for rare disease families;
Whereas payor challenges, including low reimbursement rates, administrative 
burden, and limited coverage for integrated behavioral health, further 
restrict access to timely, high-quality behavioral health services; and
Whereas continuing medical education on rare diseases and their behavioral 
health implications is limited, and incentivizing such continuing 
medical education would strengthen clinician preparedness, improve 
diagnostic accuracy, and enhance whole-person care: Now, therefore, be 
it
Resolved, That the House of Representatives--
(1) recognizes the significant and often overlooked 
behavioral health needs experienced by individuals and families 
affected by rare diseases;
(2) affirms that behavioral health care is an essential 
component of comprehensive rare disease care and should be 
integrated into clinical pathways, research agendas, and 
Federal policies;
(3) calls upon Federal agencies, including the Department 
of Health and Human Services, the National Institutes of 
Health, and the Centers for Medicare & Medicaid Services, to 
prioritize behavioral health access within rare disease 
initiatives, research funding, and care delivery models;
(4) encourages the development and expansion of 
standardized, evidence-informed peer support programs for rare 
disease patients, caregivers, and families, including support 
for virtual and community-based models;
(5) supports efforts to strengthen cultural competency and 
cultural humility across the behavioral health and rare disease 
workforce, including training, community partnerships, and 
equitable access initiatives;
(6) urges investment in the behavioral health workforce, 
particularly child and adolescent providers, to ensure adequate 
capacity to meet the needs of rare disease families;
(7) recommends that public and private payors evaluate and 
address reimbursement barriers that limit access to integrated 
behavioral health services for rare disease patients;
(8) encourages the creation of Federal incentives for 
clinicians to pursue continuing medical education on rare 
diseases, including their psychiatric and psychosocial 
dimensions; and
(9) supports ongoing collaboration among Federal agencies, 
patient advocacy organizations, academic institutions, and 
community partners to develop comprehensive strategies that 
address the behavioral health needs of the rare disease 
community.
<all>