Introduced
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.
- (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.