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

This resolution highlights the profound and often neglected behavioral health challenges faced by the millions of Americans, including many children, affected by rare diseases. Individuals and their caregivers frequently endure prolonged diagnostic journeys, leading to common behavioral health conditions such as anxiety, depression, and caregiver burnout. Access to necessary behavioral health care is severely limited due to factors like clinician shortages, geographic barriers, and insufficient reimbursement rates, contributing to fragmented care models. The resolution calls for the integration of behavioral health into all aspects of rare disease care, including clinical pathways, research, and federal policies. It urges federal agencies to prioritize behavioral health access and encourages the expansion of standardized peer support programs. Furthermore, the resolution advocates for significant investment in the behavioral health workforce, particularly child and adolescent providers, and recommends that payors address reimbursement barriers to ensure equitable access to integrated and culturally competent care.